Who are you going to listen to?

When people ask me “What exactly is autism” I usually answer with this: “A complex neurological wiring that presents differently in every single individual on the autistic spectrum”.

Because that’s just it – there is no one autism. It differs greatly from person to person and whilst they share similarities, each individual is unique and has their own strengths and weaknesses. And too often, people compare what they know autism looks like on someone’s daughter, son, cousin, nephew, niece or friend that they know personally and assume that unless their child is exactly like that – there is no chance that there could possibly be a spectrum disorder lurking in their own child.

But there are hundreds of undiagnosed kids out there. I see them everywhere I go, I have acquaintances with kids who desperately need evaluating but I can’t say anything because its not my place because I am “just a parent”.

Not as in only a parent, but as in not qualified to diagnose autism.

And thats ok because that’s true. But I know autism from a different angle than a diagnostician does, and a different angle to how a teacher might see it and I experience different elements of autism to what a textbook teaches them. I’m not a professional on any level but I know how autism looks in my own family. And that’s definitely worth something.

I know that how my boys appear in public and what we live with are two completely opposite things but that even in those moments where the untrained eye wouldn’t necessarily see autism – I still can.

I can look at my boys across a playground and see subtle things like that tiny moment of hesitation when they are spoken to by another child, the way that they move their bodies in either sensory seeking or sensory avoiding ways and the facial expressions that convey their struggles to me. And this is not just because I am their mother, but because I have learned what to look for so therefore I can no longer not see the autism.

And I can also see it in my friend’s children who are already diagnosed on the spectrum. I see those little quirks, hear those speech anomalies and observe the giveaway telltale signs that would be easy to miss if you didn’t know what you were looking for, but those kids also hide it very well in most situations. And often not even deliberately.

Even though its the doctors and health professionals who play a huge part in diagnosing our kids, they also need information and data from parents to complete their diagnosis, so what we observe about our children and report to them is an important part of the bigger picture. We do not have the final say but what we bring to the table DOES matter. We need to work together to achieve success in getting our kids what they need and deserve.

I know a reasonable amount about autism from living with it every day and from being given remarkable first hand insights into the wonderful workings of the autistic mind so it makes sense that I also notice indicators in other children almost everywhere that I go.

I see children who sit with their legs in the “w” position while playing and children who walk on their tip toes frequently. I read about parents who have children who have been terrible sleepers for years despite their best efforts to make it work and my heart breaks for those families because I feel their pain all too well.

“W” sitting
image via http://www.alignedandwell.com

Tip-toe walking
image via http://www.examiner.com

I hear about kids with high anxiety and debilitating panic attacks, and about the children who freak out if their routine is altered. And stories about kids who can’t stand to have different foods touching on their plates or refusal to wear a certain fabric and wonder if there is something more going on.

I notice photos of children who refuse to look at a camera, I see their awkward smiles where their eyes are glazed over and absent and I observe behaviours in public places from a whole new perspective since learning about the sensory issues that children on the spectrum have.

I am often told stories about the cute things other people’s kids do like lining up their toys or arranging their belongings alphabetically, in colour order or in patterns and big loud clangy alarm bells go off in my head. If someone tells me about the odd things that their child collects or shows me photos of the child immersed in a special interest of theirs and appearing unaware of their surroundings or other people because they are so engrossed, I have trouble not shouting: ‘ding, ding, ding’ in their face!

Lining up toys
image via http://www.mariasspace.com

And while its true that none of these above mentioned quirks alone mean that the child necessarily has autism , they are all indicators of autism that are often explained away as other things and might one day need to be explored further. And it saddens me when a parent is told by another well meaning friend (or worse; someone who works in childcare or some branch of medicine) only what they want to hear instead of encouraging them to follow their gut instincts.

Sometimes, when a parent tells me about unusual things that they have noticed about their child whom I already suspect could be spectrummy, I have had to learn to listen, smile and subtly suggest that if they are concerned that they should seek out a professional opinion. Because at the end of the day, my opinion is just that; my opinion. I would hate for my word to be taken as gospel when a child’s future is at stake. But so many parents DO take reassurances from friends, co-workers and sometimes even Doctors who don’t explore concerns properly.

I have had a few friends tell me things about their child that concern them only to have them finish their sentence with: ‘but it’s not autism, because my child is not like yours’ or “I know someone who works in ‘such and such a place’ and they told me that he/she is normal”.

UGH! If you’re worried about hour child’s development in ANY area, get your child assessed properly. And if you’re not being taken seriously but still have strong concerns: fight for your child!

Stand up and push until you get the answers that you need! Be the advocate your child needs.

In cases like this, I usually ask my friend if they think its would be better to ask the question and have it explored and dispelled rather than take someone’s word for it just because they don’t want to cause waves and end up with a child who needs so much more help than they would have if it were picked up earlier.

I then follow with my brain tumour story to illustrate my point.

I had a numb face, an awkward gait, was extremely clumsy and losing my hearing and the biggest indicator was something that I couldn’t describe in any other way than the non-specific “something just doesn’t feel right”.

I was seen by 7 different Doctors who gave me answers like: sleep deprivation, post natal depression (Harley was only 2 weeks old), facial palsy from pushing during childbirth and the good old ‘stress’ diagnosis but it wasn’t until I followed my “gut” instinct and demanded further testing that the 5cm tumour was found growing dangerously close to my brain stem. So if I hadn’t have followed my gut instinct and listened to well meaning friends and some Doctors who were willing to write my concerns off without further exploration, who knows how this story would have ended?

I get that this is a touchy subject, I understand that this may be confronting to read for some people and I’m sorry if I’ve hurt anyone. This is truly not my heart at all.

And no, I’m not writing about anyone I know personally here, I just know how much difference early intervention makes in a child’s life and I’m passionate about children receiving whatever help they can so that they can live their best life. Yes – we’ve had many ups and downs here since my boys were diagnosed but I KNOW that now I am doing everything in my power to give my kids the best start in life.

I used to wonder if things would be better if we’d never found out and sometimes wished that I’d kept my head in the sand for longer because its often all too confrontational and downright hard, but now I know beyond a shadow of a doubt that asking the questions and requesting evaluations was the best move I ever made for my boys.

Because like most parents, I really do just want the very best for my kids.

They deserve that.

Making big plans

The weather here in Australia has really started to warm up and the fact that Spring is only 3 days away is very apparent.

That means that soon we will start to put our new plan into action. We have decided that we will be inviting other families over here for BBQs on weekends since that’s way easier than trying to manage our kids and their anxieties at an unfamiliar place.

I walked out the backyard this morning to hang some washing on the clothesline and it really hit me just how disgusting our yard is at the moment.

We are not known for our gardening skills or our landscaping talents. And you can see from these photos that we are BRILLIANT at growing weeds!

So can you guess what we’re doing this Spring?

Yep….lots of hard work, shovelling, concreting, planting and paving!

We have phoned a landscaper and he will be coming out soon to help us to decide what we can do about it and give us some ideas. We plan to do most of it ourselves to cut the cost down but we know that we desperately need professional advice. The yard is neglected and boring and really really ugly.  Maybe once it’s done the kids will be more willing to play out there instead of being glued to some sort of screen?

And the biggie:- I  have been begging Mr Patient for an outdoor kitchen for YEARS and I have found some reasonably priced ones online and I’m pleased to announce that he is coming around!

My goal is to make an outdoor entertaining area that is so lovely that we have no need to have kids running around in our house!

I’m gonna be SO worn out after this!

Our herb garden!

We grow pretty awesome weeds!

Erm...Only a LITTLE bit neglected!

5 Things they rarely tell you about weight loss.

Last Christmas, a friend posted some photos on Facebook that were taken at a Christmas party that we both attended and tagged me in them and I was absolutely mortified to say the least.

They were actually really great pics but they alerted me to an ugly truth that I had been avoiding for quite some time.

I was overweight.

The picture that started it all....

Of course I already knew that, but until I saw these photos – I didn’t realise just how bad I had let it get. I thought I had maybe gained 2 or 3 kilos but in reality it turned out to be a whopping 15 kilos.

Ugh…

I cried and cried for about an hour that day and decided that it had reached a point where I could either a) keep getting heavier and heavier and more and more depressed or I could b) do something about it.

I chose the latter and set my mind on achieving my goal.

After my Dad passed away a few years ago – I plunged into a deep depression and self medicated with food.

I spent years telling myself that I was too busy and tired and that I couldn’t afford to do anything about it. I also told myself that because I am raising autistic children that they are the most important thing in my life and that looking after myself wasn’t a priority.  I was meticulous with their diets but paid no attention to my own.

But after I saw those photos, I was confronted with reality and it finally dawned on me that if I didn’t take care of myself (the carer) – then eventually I would end up in no condition to care for my children.

I was chock-full of excuses because deep down I knew that the truth was: I really couldn’t be bothered.

But that was then and this time I was determined.

So did I do it?

Did  I lose the weight?

I sure did! And as of today – I am 17 kilos lighter and back below my ideal weight. In fact – I’m actually wearing a smaller dress size than I was BEFORE I had children!

I know it's very posey but it's the best that we could get!

And I learned some really interesting things about myself during the past 8 months and was surprised that no-one ever really talks about these things.

I compiled them into this post and thought I’d share my personal lightbulb moments with you.

~~~~~~~~ 

1. Losing weight won’t change who you are.

Put simply – if you don’t love yourself before you lose weight – that won’t magically change after.

I always thought that once I reached my ideal weight that I’d instantly be happy and things would just fall into place. I thought that the little things about me that I despised wouldn’t bother me once I lost the weight.

Not so. In fact, things that aren’t dealt with and were possible triggers for the initial weight gain actually get magnified after you lose the weight because you are forced to admit that they still exist despite your reflection changing.

For me – a lot of my gain was due to emotional overeating and not coping or dealing with my stress.

Losing weight didn’t magically make my struggles disappear – I still have to live with autism every.single.day and I still have days where I want to throw myself in front of a bus, but I have learned new ways to deal with them instead of eating. I now view my hurdles in a different light because I feel better about myself and am now able to do that.

And while I’m on this subject – what’s with those people in your life that suddenly start acknowledging you once you’re thinner. Like you were invisible before hand?  I don’t get that. I didn’t change but somehow became more socially acceptable?

Okaaaaayy!???

~

2. The only person you should lose weight for is yourself.

That’s right. Just for yourself. Not for anyone else.

One of my biggest hurdles was that my husband always told me that he loved me regardless of what I weighed. And because of this – I wasn’t motivated to do anything about it.

See....he loved me even when I was overweight.

I had to make the choice to do it because I wanted to feel better about myself.

And to be frank – any boyfriend/partner/husband that truly loves you won’t threaten to leave you if you don’t lose weight.  And they won’t deliberately eat banned foods in front of you or taunt you if you slip up. If you are losing weight just to keep them happy – you are doing it for the wrong reasons and once you lose it, they will find something else to pick on.

A supportive partner will encourage you, praise your successes and comfort you when you fail.

 And I am speaking from experience here. I had a boyfriend for 2 years who frequently told me I was an elephant. He always pointed out girls on the street who were smaller than me and told me that I needed to look like them in order to be appear more attractive to him.  He snorted like a pig every time I would put anything that wasn’t a vegetable or salad item into my mouth and made the beep beep noise of a reversing truck every time that I stepped backwards.

And the interesting thing…..I was smaller than my husband has ever seen me at the time that he was taunting me. Smaller than I am now….Pffftt.

No wonder I had “issues” with my weight for years.

~

3. Chocolate is NOT the enemy.

 Yep – you read that correctly, chocolate is NOT the enemy. In fact – no single food is. It is eating an excess of any food that does you in.

I still eat chocolate pretty much every day.

Yes…..every day. But I don’t eat any more than about 15-20g and I savour it.

I noticed that whenever I would deny myself of something  – it would only make me crave it MORE and I would either give into the craving and over indulge and then beat myself up about it, or get filled with resentment at everything that I was missing out on.

Not only have I had to learn about portion control but I’ve had to alter my buying habits to make this possible.   I STILL can’t buy a whole block of chocolate and tell myself that I’m only allowed 2 or 3 squares a night. Because once that block is open – I will more than likely tell myself that it’s ok to have just one more piece. And another. And another.

And we all know where that leads.

Guilt….then more emotional/guilt eating…..more weight gain….then more depression. It’s a vicious cycle.

And I can’t buy those family share packs with 12 individually wrapped bars in them either because I am unable to stop at one.

I buy very small chocolate bars and I buy them one at a time.

The smallest bar size possible and I enjoy every.single.bite.

~

4. Not everybody in your life will support you.

This was a tough one for me to learn.

It had honestly never occurred to me that some friends are threatened when you start to shed kilos. Maybe they’re jealous or maybe it’s more than that.

Maybe it’s because you’re no longer the “fat friend” that they could rely on to make them feel better about themselves?  I was often the one that people would deliberately stand next to in photographs because they ALWAYS looked better compared to me and they were the friends who were never 100% honest with me in the first place.

They were the friends who often told me that I looked “fine” and that they didn’t think I needed to lose any weight to my face but would then talk about me behind my back when they didn’t realise I could hear them.

And then they are the exact same friends that try to sabotage you when you start your weight loss journey by showing up on your doorstep with cakes, and other yummy things that they know you struggle to say no to.

And also the friends that not even once congratulate you when you do eventually drop the extra weight.

Nobody needs friends like this in their lives.

They are toxic.

~

5. There is no perfect weight or dress size.

It is different for everyone. I have finally realised that I could starve myself and spend every waking moment at the gym and still probably never be an Australian size 6 – 8.

And now I’m ok with that.

It’s not in my genes for a start, I’m not built that way and I have a frame and height that could never support that.

And if I ever did get down to an 6 – 8, I wouldn’t be able to maintain it without ending up resenting everyone and everything because the sacrifices I’d have to make to stay there would be mammoth.

And the old adage that we can’t all be supermodels is so true.  If I had a personal chef, a personal trainer, a full-time nanny and a dietician on staff I’m sure that I could get there but that’s simply not (or will ever be) my reality so I can give myself a break!

So…what are some of the weight loss myths or stories that you have to tell me about?
I can’t wait to hear them  :)

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?

Have a heart…..

My beautiful girl and me

Today was a-mazing. It was one of those awesome days that I will remember for a long time – but it certainly didn’t start out that way.

We need to leave the house for school at 8am at the latest so when I walked out of my bedroom at 7:45 this morning after having my shower and noticed all 3 kids sitting on the lounge in their pyjamas watching television – I completely flipped out.

I couldn’t believe that they were that vague and clueless. I was in total disbelief that not one of them had even made a start towards getting ready and here it was only 15 minutes until I needed to be reversing down the flippin’ driveway!

I pointed at the clock and yelled a few choice phrases at no-one in particular while waving my arms madly in all directions.

Not surprisingly it did nothing to motivate them but the threat of arriving at school still in their pj’s did the trick!

After much yelling and fighting, the boys eventually dressed themselves and headed out to the car whilst I walked into the bathroom to check on Ella’s progress. As soon as I clapped eyes on her I could tell straight away that something was most definitely up but I didn’t have time for it right then.

She had a faraway look in her eyes and a sad downcast face and was just standing inside the shower cubicle staring into space.
I tapped on the screen and told her to hurry up so she turned off the water and dried and dressed herself just in the nick of time!

As we neared the front door on our way out to the car, I glanced over at her in time to see the tears welling in her eyes and I knew immediately that she needed a break. I also know that she rarely draws attention to herself and would likely soldier on for the sake of keeping the peace despite the fact that she wasn’t doing so well.

I knew that I had to step in.

I put my bag back down again not worrying about how late we were and pulled her close into a hug and then the dam well and truly burst. The tears freely flowed and she sobbed into my shoulder that she just can’t take it anymore and that it was all too hard.

I knew what she meant….they boys certainly ARE a challenge and I nodded in agreement. Autism has stolen SO MUCH from our family but I’ll be damned if I let it ruin my relationship with Ella too. I decided on the spot that a Mummy/Daughter day was the perfect prescription for today and she looked SO relieved when I suggested this to her.

So after I dropped the boys off at school and pre-school we planned how we were going to spend the rest of the day together.

Lunch and coffee were definitely on the cards and so was chatting about her struggles and just chilling out. She’s never been much of a shopper (I KNOW!) but we managed to squeeze in a little bit of retail therapy as well!

We both decided that we needed to each buy a heart necklace to wear to remind us both that we are loved but being that there is a 24 age gap between my girl and I – we couldn’t agree on the same style so each picked one that suited us instead.

Aren't they great? Mine's the one on the left.

Today I was granted a rare glimpse into what makes my little girl tick and saw that there is a lot of hurt and emotional grief that is hovering in her. This is partly because of her approaching teen years and the crazy hormones that are at work within her, but also due to the constant crisis that she lives with because of the high needs that her brothers have and the time that they require from me and Mr Patient.

Today was the circuit breaker that she so desperately craved but didn’t know how to ask for and I’m thrilled that we got to spend this precious time together. I’m also incredibly grateful that I am in a fortunate position that I didn’t have to go to work today and was able to pull this off.

After lunch we met a dear friend for coffee who showered us both with gifts and enforced the point to Ella that she is a princess who is just as worthy of time and love as her more needy brothers. She was made to feel special and encouraged to shine and I am so thankful to Mrs K for reaching out to my hurting girl and for being such an amazing lady.

I know that it’s all going to be ok. She is going to grow into a beautiful young lady and God will give me the grace to parent her just the way that she needs to be and He will fill my mouth with the words that she needs to hear at exactly the right time.

No-one said that any of this was going to be easy – but that’s ok….I’m well and truly up for the challenge

Life is gooooooood

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

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.

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

Is coffee really the answer?

If you read this blog regularly, you would know that coffee is one incredibly big crutch in my life. It is usually the first thing that I look for upon waking in the morning and something that I crave many MANY times throughout the day.   

Yes….I do believe that I am addicted and I also believe that it’s going to be quite a large hurdle for me to overcome but understanding the “Why” of my excess caffeine consumption may be the key to understanding my somewhat insatiable desire to pump myself full of the toxic liquid daily.

I noticed something very interesting today as I reached for my 5th cup at only 10am.

I realised that there is a very obvious link between emotions and coffee with me.  I guess you could say that it is a similar response to that of emotional eating.

I have been incredibly down for the past few days and spent a couple of hours this morning talking to Mr Patient about it. I sat with him in the sunshine on our front lawn and watched the neighbourhood children riding their scooters and bikes and kicking footballs in the cul-de-sac.

The next-door neighbours were hosting a BBQ (a frequent occurrence that we have NEVER been invited to) and had several cars in their driveway and we could hear the laughter and fun emanating from their backyard.

So….where were our children?

Inside.

With all the blinds closed and the heater on. One was on the laptop. One was on my iPad and the other was on his Nintendo DS. None of them were interested in socialising with the neighbour’s kids and none of them cared to leave the sanctuary of the house.

We realised that we were actually enabling them by allowing this to go on so we made a decision to go and turn all of them off and make them do outside to enjoy the beautiful day that God had given. The tears, tantrums and moaning started and we were told repeatedly that we were “horrible parents” and that we are “SO mean”. Harley even chipped in with “When I grow up and have kids – I’m NEVER going to be THIS awful to them!”.

Cue parental eye rolling.

Part of the conversation that I had with Mr Patient earlier included me asking him what he envisioned weekends would be like when we had a family. His response was surprisingly very similar to what mine was. It included: taking the kids to their various sporting activities, maybe going on picnics, spending it with other families or going for drives to sight see or visit friends.

But of course-our reality is VERY different.

Sure – we could do these things. We COULD arrange something fun every other weekend but we both know that whenever we have ventured out of the “norm” that we pay for it severely over the following days.

Our kids HATE socialising, we don’t have any “family friends” (meaning other families that we socialise with) – they’ve all moved away, and we are not involved in anything that could introduce us to new people therefore allowing for invitations. Sporting events usually end in tears because most ASD kids simply don’t possess the ability to handle losing. We have spent countless hours trying to teach this foreign concept to the boys with limited success because to them – failure is a blemish on their incredibly high self-standards and perfectionistic natures.

Going to church on Sundays is such a major melodrama that it hardly seems worth the hassle and the aftermath of taking our children anywhere different is always so explosive and ridiculously hard that it’s easier to just stay in our little autism bubble and keep to ourselves.

Sounds great right? Just stay home and it will all be fine and dandy?

Well – yes it’s easier on the children and causes less dramas but it’s absolutely KILLING me. I get so depressed when I hear other people recount their weekend activities to other friends and hear about the exciting things that have planned for the upcoming one.

The stories about their adventures and social gatherings that were spontaneously organised.

My weekends are always exactly the same.

Housework. Refereeing sibling arguments, housework, figuring out reasons for meltdowns, housework and trying to keep the peace amongst children that can’t seem to co-exist in the same 4 walls, and you guessed it…more housework.

Surely this isn’t as good as it gets?

Is it?

But back to the caffeine/emotions link.

This afternoon, right after we took the electronics off the children and arranged for us all to go for a walk in the sunshine, and the tears flowed and the anger surfaced – I reached for my favourite coffee mug.

As soon as that hot black strong espresso shot was making it’s way down my throat, I instantly felt the rush of adrenaline that it provided and was ready to tackle the meltdown head on.

I carried Lucas to his bedroom and Harley to his and told them both that crying wasn’t going to fix anything and that I wasn’t going to change my mind. The crying eventually subsided and they dressed themselves (well …kinda!) and as a reward for myself, I went and pushed the button on the coffee machine to deliver another shot of emotional comfort.

I was just about to put it to my lips when I suddenly remembered something that I had read years earlier. It came back to me as clear as a bell and it knocked me for six. The phrase that I had remembered related to the link between emotional eating and weight gain,:

“The worst part about emotional eating is it actually causes your problems to multiply. Eventually, instead of avoiding the issues you’re stuffing down with food, you’ve created another one altogether — weight gain, guilt about eating, worsening health … and then it starts all over again.”

I stopped dead in my tracks as I realised that I was self-medicating with caffeine. And the bigger problems that it creates are: headaches, irritability, heart palpitations, mood swings and dehydration to name just a few.

I didn’t particularly “need” that cup of coffee. Sure-I still love the taste and I do believe that I am very much addicted, but the bigger problem is that I usually just drink it to avoid dealing with what is really upsetting me at the time.

It gives me a rush of control that I desperately crave and takes my mind away from whatever drama is unfolding at the time.

I noticed that I rarely drink it when I’m home alone on Lucas’ pre-school days and I drink the most coffee before and after school and on weekends.

And what is usually the thing that upsets me is the perceived loss of “who I am” and “what I think I need to feel happy”.

The sheer stress of the constant tears, meltdowns, fighting, complaining and rigid/frantically obsessive behaviour that the boys exhibit just makes me want to poke my eyeballs out.

But of course it’s much easier to press the espresso button on the coffee machine than it is to endure the excruciating pain that one would experience with the poking out of ones eyeballs! Not to mention the inconvenience of not being able to actually SEE the melodramas unfolding

Ok….Link recognised and understanding established. I just need to figure out the best way to tackle this one.

.

Oh , who am I kidding! – it’s all too hard…. now -where did I leave that damn coffee mug?…….

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!!!

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

The “G” word…

Sometimes, answers can come from the strangest of places. And by strange, I mean from somewhere that you least expected it to.   

Somewhere you’d never have imagined and from someone who you barely even know.

BUT – God works in mysterious ways!

If you click here you will read that this blog was always intended to be a place where I could write about whatever I needed to at any given time NOT just about parenting children with autism.

Of course- it all ties together in the end because autism is so intricately woven into every single part of our lives. But this is not a specifically autism related post per se.

I will start this post off with somewhat of a “warning”.

This post is going to be a deep one. It’s going to be a little long and probably a bit confronting for some people.

It is full of my life story and if you don’t read through until the end, it may seem like a bunch of annoying complaining, but if you do choose to read, you’ll see the awesome self discovery that I’ve made and you might even see your own life in a new light.

Who knows?

Right. That said – I’m going to do a quick flash back to my last post where I admitted that I have been struggling a lot with depression lately.

I ended that post with words to the effect of: Autism is the root issue of everything that’s difficult about my life.

A few hours after I’d published it, a very close friend wrote to me and said that she had just finished reading it and that she didn’t feel that autism really was the reason for all my sadness and pain. She said that she believed that autism was just a small part of the bigger picture but that she didn’t quite know what “the thing” was.

I actually completely agreed with her – but because I was still unable to figure out why on earth I seem to struggle SO much more than other autism mothers (maybe it was just my own skewed perception), I assumed that autism was to blame.   It was something that bothered me endlessly and I needed an answer and that one was the most obvious choice.

Anyway, one of my regular readers and commenters, a lovely woman whom I have never met (but hope to one day) wrote that she thinks that I am still in a period of grief. And as soon as I read that something inside of me shouted YES! That’s it!

I KNEW that there was something in that!

And I don’t believe that it’s all related to my father passing away a couple of short years ago. I found this wonderful passage in a psychology book (of all places) and it was spot on as far as I’m concerned.

“Many assume that grief is associated only with the loss of a loved one.
Psychology shows us that this is very often not the case, but those suffering grief from things other than the death of someone are often told to “snap out of it.”
Grief is, quite simply put, a response to loss.
The loss can be of something tangible or intangible. It helps to recognize that disappointments, abuse, recognizing one’s limitations, illness, losing a job, or so many other things can elicit a grief response.
People suffering a loss need time to grieve, and such time depends upon how important the loss was.”

W-O-W!

YES! That’s me!

Let’s see: In 2 short years, I had 5 major surgeries. Check.

The brain surgery being the biggest at a whopping 13.5 hours long – complete with a collapsed lung and the recommended recovery period from this is 2 YEARS!

I had an undiagnosed/ aggressive/ insomniac autistic 18-month-old child on my hands at home so recovery wasn’t really an option.

9 months after that, I had my corneal transplant then found out I was pregnant with our unplanned “high-risk” baby Lucas. Check.

Consequently, I had a general anaesthetic c-section followed by a tubal ligation and ALL of these took place in the time that I was “supposed” to be recovering from brain surgery.

We had the added stress of our finances being incredibly stretched due to all of the medical bills I’d racked up (You’d think having brain surgery to remove a 5cm tumour would be covered under Medicare wouldn’t you?) And not to mention the exorbitant costs related to the corneal transplant too. Check.

And just after Lucas was born, I had to undergo surgery for the 5th time to get my gall bladder removed. (There were 90 something peppercorn sized stones in my sterile jar if I remember correctly!) Check.

Then my dear Dad was diagnosed with cancer and shortly after I contracted glandular fever and due to not being able to recover properly– my Doctor told me I was borderline chronic fatigue. Lovely!    This possibility scared the wits out of me so emergency procedures were put into place and Mr Patient was forced to take time off work until I was well enough to carry on. Check.

A few months after that, I received a phone call from my Mum asking my sister and me to go home immediately because the Doctors had told her that Dad was on his deathbed.

We rushed home and he died a few short days later. Check.

6 months after losing Dad, we were slugged with Harley’s autism diagnosis and it was about then that I started blaming autism for everything that I hated about my life. Check.

And while we’re talking about grief – there is definitely a grieving process related to the discovery that your child is “different”, (though I do believe that my kids can do whatever it is that they choose to do and that they will do it well!)

I went to a counsellor and she ordered that I be medicated before she’d even attempt to talk to me again. She diagnosed me with “acute clinical depression” (Whatever that means!)

I didn’t see her for very long because it got far too expensive and she was difficult to get appointments with plus I had no-one able to mind 3 small children for me. I did however find another counsellor that I was able to see during school hours and had a wonderful baby sitter for Lucas – but that was also short-lived due to the time constraints and travel involved.

It’s times like THIS that I find having no family to help out really tough. You can only ask friends to help out so many times before you wear out your welcome no matter how many times they say they’re happy to help.

The simple fact here is: I haven’t had time to grieve ANY of these things that have gone on in my life because they have all happened so closely to each other and they have kept compounding and building up and it TOTALLY explains why there always seems to be a pressure cooker ready to explode in my brain!

Now that I know that it is grief that’s holding me back , I can finally stop blaming myself for not coping as well as everybody else.

I can stop wondering “WHY” I suck at things that other people seem to just drift through and I can now actually believe it when my Mum tells me that I’m NOT a basket case & I’m NOT a crappy, disorganized, useless mother – I just have a lot on my plate and I have a lot of grief to work through!

It’s the keeping it real factor that I have been struggling the most with.

I have always found it REALLY difficult to “put on a happy face” when I feel like screaming.

I’ve struggled to “appear” normal for fear of turning people away.

And I honestly physically hurt whenever I tried to be something I’m not. I know my intensity can be scary and my emotional rollercoasters are annoying – but I’m still a work in progress here.

I’m living, learning and growing.

I’m still grieving, but the thing that excites me the most is that I have discovered that I am up to step 4 in the 5 part grieving process of:

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side

Write til it’s right.

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

image via ... rehendhi.wordpress.com

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

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

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

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

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

“Are you a mother?” she asked.

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

Yep. Autism.

It really is a bugger of a thing.

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

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

But sometimes……life really majorly stinks.

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

Count them one-by-one.

It’s funny to me – but every time I have a rough day and start to get depressed, God ALWAYS causes me to stop and take note of my many blessings.

And every time that I do, I become overwhelmed with just how many things I have to be thankful for. Like for example: my beautiful 11-yr-old daughter Ella. She’s amazing.

REALLY amazing!

This child is the gift that we received without even asking for it.

She was a “surprise” and threw us into a bit of a tailspin when we first found out that we were expecting her because “our” plans were to be married 3-4 years and then START trying for a baby. But God had other ideas.

So 15 months after tying the knot – we were thrust into baby mode.

I look back now and simply can’t believe that I thought motherhood was hard work. I had NO CLUE what hard work was when I only had her to care for because she was so darn easy.

She was a textbook baby, ate solids easily at 4 months, slept through the night at 6 weeks (yes, I’m absolutely serious), sat happily in a high chair whenever we would go out for dinner or with friends (which we did FREQUENTLY when she was little) and slotted perfectly into our little family. Life really didn’t change that much when it was just the three of us because she was THAT easy-going.

I would look at other people struggling with their children and secretly think “All they need to do is be a firmer parent.”

With friends who had bad sleepers, I would think ”Just put them to bed and walk out…..it’s all about being the strong parent!”

If friends had a bad eater “Just be firm – tell them that they HAVE to eat it”

And the worst – when people told me that they were housebound and couldn’t possibly attend the dinner/movie/party that we organised because their child was such a crier/bad/sleeper/eater etc, I would roll my internal eyes and think “MAKE the child fit in – it’s really not that hard!”

Oooohhhh eeeeee!

I surely needed a slap up the side of the head and I received it in Harley!

Don’t misunderstand me though – I adore this boy more than I can describe, he brings me laughter, joy, warm hugs, emotional pride and more affection that I could ever ask for but he also brought a lot of emotional overload, stressful heart palpitations and endless tears into my life!

I don’t believe that God punishes people with difficult children but I do believe that I needed a good solid reality check and Harley was part of that!

Ella was not just like this as a baby – she is STILL like this!

She is the most easy-going, laid back, helpful, kind, gentle child.

Take this morning or example: Mr Patient is working today.He is interviewing people for a census job that’s coming up and will be out of the house pretty much all day.

She came into my room while I was still in bed this morning and told me that she had just finished making breakfast for the boys. She was holding a freshly made latte for me and placed it down on my bedside table with a smile and a kiss on my forehead and told me that I should rest and that she would take care of Harley and Lucas for me.

I couldn’t believe how blessed I was but I did get up all the same. The boys were begging for the iPad so I brought it out to them and sat down with my cuppa and chatted with Ella for a while.

After about half an hour I decided to get a start on the housework and told her that she was allowed some computer time. (Her FAVOURITE thing in the world!)

Now…tell me…..how many 11 year olds will arrange themselves at the dining room table on the laptop with their back to their mother JUST so I could see the screen and monitor her internet surfing?

This precious child is not the least bit secretive or manipulative. I can’t believe how blessed I am to have such an awesome girl!

Yes….life IS good. Sure the boys can be hard yakka but that just makes it interesting!

Harley just came up and hugged me and thanked me for letting him use the iPad and Lucas told me that I am his best friend.

Aren’t my kids all just so awesome?!

Remind me of this next time I have a whinge won’t you!

Fi x

Angry birds and Happy Children.

Wow!

What a weekend!  

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

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

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

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

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

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

~

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

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

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

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

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

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

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

So this weekend was very healing for both of us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now…..back to life as I know it….

*sigh*

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?

Da da da dum!

This weekend Ella and I are flying up to my hometown for the wedding of my (almost sister) *Rebecca.

I’m SO excited !!!!

I have known Rebecca her entire life and her big sister is my BFF *Hannah who I regularly write about on here

She was one of the 5 of us kids (me and my sister and the 3 of them) who grew up in each other’s houses sharing our parents and everything that we owned. I’m absolutely thrilled that she found such a wonderful man to marry and can’t wait to be a part of their special day on this coming Saturday.

I’m still sad that it didn’t work out for my whole family to attend, but  Ella and I are looking forward to it all the same.

Here is a photo of the bride to be:

And here are a few teaser photos of what Ella and I are wearing

I will upload some more after the fact

* Not her real name…..

The Invisible Mother

I was sent this in an email this week and it made me cry.

It summed up EVERYTHING that I have been feeling lately and really made me stop and realise my actual worth as a mother.   

It all began to make sense, the blank stares,  the lack of response, the way one of the kids will walk into the room while  I’m on the phone and ask to be taken to the store. Inside I’m thinking,  ”Can’t you see I’m on the phone?”

Obviously not; no one can  see if I’m on the phone, or cooking, or sweeping the floor, or even standing  on my head in the corner, because no one can see me at all. I’m invisible.  The invisible Mom. Some days I am only a pair of hands, nothing more! Can  you fix this? Can you tie this? Can you open this?

Some days  I’m not a pair of hands; I’m not even a human being. I’m a clock to ask,  ”What time is it?” I’m a satellite guide to answer, “What number is the  Disney Channel” ( Jersey Shore now:() I’m a car to order, “Right around  5:30, please.”

Some days I’m a crystal ball; “Where’s my  other sock?, Where’s my phone?, What’s for dinner?”

I was  certain that these were the hands that once held books and the eyes that  studied history, music and literature -but now, they had disappeared into  the peanut butter, never to be seen again. She’s going, she’s going, she’s  gone!

One night, a group of us were having dinner,  celebrating the return of a friend from England . She had just gotten back  from a fabulous trip, and she was going on and on about the hotel she stayed  in. I was sitting there, looking around at the others all put together so  well. It was hard not to compare and feel sorry for myself. I was feeling  pretty pathetic, when she turned to me with a beautifully wrapped package,  and said, “I brought you this.” It was a book on the great cathedrals of  Europe . I wasn’t exactly sure why she’d given it to me until I read her  inscription: “With admiration for the greatness of what you are building  when no one sees.”

In the days ahead I would read – no,  devour – the book. And I would discover what would become for me, four  life-changing truths, after which I could pattern my work:
1.) No  one can say who built the great cathedrals – we have no record of their  names.
2.) These builders gave their whole lives for a work they  would never see finished.
3.) They made great sacrifices and  expected no credit.
4.) The passion of their building was fueled  by their faith that the eyes of God saw everything.

A story  of legend in the book told of a rich man who came to visit the cathedral  while it was being built, and he saw a workman carving a tiny bird on the  inside of a beam. He was puzzled and asked the man, “Why are you spending so  much time carving that bird into a beam that will be covered by the roof, No  one will ever see it.” And the workman replied, “Because God sees.”

I closed the book, feeling the missing piece fall into place.  It was almost as if I heard God whispering to me, “I see you. I see the  sacrifices you make every day, even when no one around you does.”

No act of kindness you’ve done, no sequin you’ve sewn on, no  cupcake you’ve baked, no hockey/soccer/piano/Scout/school meeting, no last  minute errand is too small for me to notice and smile over. You are building  a great cathedral, but you can’t see right now what it will become.

I keep the right perspective when I see myself as a great  builder. As one of the people who show up at a job that they will never see  finished, to work on something that their name will never be on. The writer  of the book went so far as to say that no cathedrals could ever be built in  our lifetime because there are so few people willing to sacrifice to that  degree.

When I really think about it, I don’t want my son to  tell the friend he’s bringing home from college for Thanksgiving, “My Mom  gets up at four in the morning and bakes homemade pies, and then she hand  bastes a turkey for three hours and presses all the linens for the table.”  That would mean I’d built a monument to myself. I just want him to want to  come home. And then, if there is anything more to say to his friend, he’d  say, “You’re gonna love it there!”

As mothers, we are  building great cathedrals. We cannot be seen if we’re doing it right. And  one day, it is very possible that the world will marvel, not only at what we  have built, but at the beauty that has been added to the world by the  sacrifices of invisible mothers.

Share this with all the  Invisible Moms you know…I just did.

The Will of God will  never take you where the Grace of God will not protect you.

To all the wonderful mothers out there…God bless and keep  you!

The difficult decisions….

Last night Mr Patient and I had to make a difficult decision.

We tossed it over for a couple of days before coming to the conclusion that we had to change our RSVP details for a very close friend’s wedding that’s in only three weeks time.

The wedding is being held 600km away in my home town and the bride is my BFF little sister.

She is marrying a lovely guy and I know that they will be very happy together and I’m very excited that I will still be going.

Originally all 5 of us were attending and I had already organised all of the children’s outfits and made plans towards keeping them occupied during the ceremony but despite all of this -I was still harbouring quite a lot of doubt and trepidation.

After our looooong drive home from Mum’s yesterday, we decided that we didn’t want to take our chances of that happening again. It would have been a very quick trip up with us not arriving until late Friday night – the wedding on Saturday afternoon and then leaving again the very next morning.

There is just no way that my boys could handle such a busy weekend. (Well not without us copping the consequences later)! So we have made the decision that Ella and I will fly up together on the morning of the wedding and the fly back home again the next morning.

It means that Ella and I will get to spend some girly time together and the boys are planning a movie, pizza and popcorn night in front of the television!

I rang the bride and her mum yesterday to break the news and I felt TERRIBLE doing this to them -especially so close to the wedding date but they.were.amazing.

Both of them were so understanding and so compassionate. I cried when I hung up the phone because I felt like such a cad….

They have both known me my entire life-our families grew up together so our friendship is not just one of casual aquaintance so for us to pull out is a REALLY BIG DEAL!

I know that when the rubber hits the road that I have made the best decision for my boys and for our sanity (and theirs as well) and I know that our friends really are ok with this…..so why do I continue to feel like a wretch.

I need to get over myself I think.

I clearly haven’t gotten to that place yet where I stop worrying what others will think of me.

I know I’ll get there one day, just not yet

It all comes back to autism

Yesterday we drove the long haul back home from our holiday up at Mum’s.

It should have only taken 6 hours…..but …due to heavy Easter traffic and a few motor accidents….it took us a whopping 9 hours!

And the extra 3 hours in the car with the kiddos was NOT my idea of fun let me tell you! But to their credit…..they handled it quite well.

We arrived home at about 9pm and put the kids straight to bed. Mr Patient unpacked everything from the car and we both took one look at the pile of suitcases and bags that were covering the lounge room floor and promptly decided that it could wait until tomorrow.

We made a cup of tea and sat down and exhaled for the first time.

Then it happened…….I burst into tears.

image from mitchieville.com

It wasn’t just a sniffle and a couple of tears trickling down my cheek – no, it was the really ugly cry. The one with the sobbing, the snot and the in-coherant words!

It all hit me at once. I was back to real life. 

That means school, therapies, homework, a constantly late home husband and a to-do list that’s ALWAYS longer than there are hours in the day.

And I know how exhausting my life is. I wished the same wish that I have wished for about 8 years now……that my Mum lived closer and that I didn’t have to keep pushing this damn elephant up this damn mountain!!

And as Mr Patient and I talked it out….I had a real light bulb moment (or Oprah moment as they are also known).

I realised that EVERYTHING that I am unhappy with in my life at the moment…..All comes back to autism!…

Let me explain:

I verbally listed to my long-suffering husband, all the things that I wished were different:

Firstly, I have wished that I lived closer to my parents for 8 years now….how old is Harley?….that’s right..8

I coped fine with Ella for 3 and a half years, but from the day that Harley was born, we have struggled  immensely with him.

The reason? …AUTISM.

And take the kid’s school situation. The support team at the school is absolutely amazing, the problem is that there simply isn’t enough of them to go around. This results in Harley not getting anywhere NEAR the aide that he requires and we KNOW that Lucas won’t receive it either when he starts next year.

The reason this is an issue for us?…..AUTISM.

Next there is the friendship thing…..sure we have some really wonderful and genuine people in our lives right now, but I could count the people that I can actually guarantee would be there for us in times of need on both hands.

And why have a lot of our friends evaporated?……AUTISM.

What about the money thing? Where does it all go nowadays?

Let’s see….there’s speech therapists, OTs, tutors,psychologists,paediatricians, GPs,medications, gluten-free diets, etc etc etc…..and why do we have all these expenses?

That’s right AUTISM….is anyone else sensing a theme here?

Rather than go on and on about all of these crappy things and the REST, (I think I’ve made my point!) , I really had to slap myself about and make a determined decision to suck it up and move on.

I recognised what this thinking was doing to me….it was poisoning me from the inside out. I was becoming REALLY woe is me and started my own little pity party.

I decided that I don’t want to end up resenting my kids.

I know that it’s not fair but I also know that none of it is going to change anytime soon.

My Dad always used to tell me that life isn’t fair, and I absolutely HATED it when he said that. But you know what?……He was right…!

And do me a favour will you all?

Promise to hassle, harass and harangue me and remind me of this post the next time I start to sink down into “poor me” mode again will you?

Because it’s bound to happen sooner or later!

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