Thankful

I can clearly remember the first time that it really hit me that I am a parent.  And I’m not talking about the moment I saw two red lines on the home pregnancy test, or the moment when the Dr confirmed my pregnancy or even the first time that I looked into my new daughter’s eyes 3 hours after the most pain I’ve experienced to date.

I’m talking about the moment when the reality hit me that I was no longer “Daddy’s Little Girl” or “Mummy’s Princess” but a grown up who now had to be the one who would be looked up to instead of the one doing the looking up.

And I’ve gotta tell you, it scared the absolute crap out of me.

As a child I remember running into my parent’s bed in the middle of thunderstorms and being comforted just by sensing them near me. And I recall many times when I got lost at the shops momentarily until my parents sought me out. I even remember my Dad sitting on the edge of my bed and praying that fear would leave me as I shook because I was so frightened of the dark. He turned the toilet light on that night and it stayed on for many years afterwards.

But when that day comes that you realise that YOU are now the go-to person when a child is seeking comfort, it can be both touching and overwhelming at the same time. My kids look to me with admiration and total trust and rely on me to be their safe place, I am the one that they run to when the sky is lit up with lightening and the house feels like it’s shaking from the thunder. My bed is where they end up snuggling into me, and I am the one who goes into bat for them every time that a situation starts to escalate and become beyond their control.

It’s a lot of pressure and at times can be frustrating, tiring and really damn annoying. But I have come to realise that I am extremely and totally blessed beyond belief.

I get to be a safe place. 

And that’s a blessing that a lot of people will never know. So I’m definitely not complaining.

~~

I have gone back and forth over whether or not to add my 2 cents worth to the shooting tragedy in Newtown Connecticut a couple of days ago and almost decided not to write anything in case it appeared that I am trying to score hits on my blog by doing so. And I don’t want to use something so horrific to attract traffic here; which is why I am not going to add any tags containing those words.

What I am about to write is for you guys; the faithful readers who already know me and know that it’s not my heart to benefit from things like this.

~~

Two of my children are in the age group of the children who were massacred so it was really close to home for me. I have done a lot of thinking since the shootings occurred and my heart is aching for those families who have just experienced more tragedy than any other human being should have to bear: The loss of a child.

They will never get to be their child’s safe place ever again. They won’t feel the warmth of a small child snuggling into them seeking protection and they would give ANYTHING to be able to hold their baby in their arms one more time. And there are many other families who are also affected because their child was one of the “lucky” ones who got away. These babies have been exposed to things that no human being should ever have to witness in their lifetime.

I have written a lot about how hard I find parenting on this blog. I have written about the good times, the shocking times and almost everything in between. But from now on – even when I’m in the heart of one of the worst moments imaginable – I vow to remain acutely aware that I am blessed just because I get to be called “Mum”.

I’m not weighing in on arguments about gun laws, mental health issues or the concept of taking God out of schools in America (as has been in the media constantly over the past few days). There are many other bloggers far more qualified than me who are already writing about the bigger issues.

But as a Mummy blogger I am going to say that I am going to remember that no matter how frightening and overwhelming this whole “being a parent” thing can get – I will make the choice to be thankful.

• Thankful that I can hold my babies close.
• Thankful that I can be a safe place even at 3 o’clock in the morning,
• Thankful for life.

For me – I’ve come to realise how sad it is that it has taken something so tragic for me to recognise how blessed I am.

I will continue to pray for the families who have lost everything.

I really  wish that I could do more.

Wordless Wednesday-13th June 2102

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

What I’ve learned these past few years.

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

That is the nature of autism.

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

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

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

What has autism taught you?

Whatever works.

  I am learning that our family is very different to most families. We don’t operate in the same ways that other families do and probably never will. Our methods may sometimes seem a little odd to the uninitiated outsider, but that’s ok

I have written before that I literally tossed out all the parenting books that we owned because none of them were covering the issues that we dealt with and as a result, we have had to figure out different ways to communicate with and discipline our children more effectively.

Ways that really work for us.

Years ago, I can remember sitting down watching Super Nanny and being so impressed by her techniques and I often teared up when the family became closer to each other and way more functioning as a unit by the end of the 60 minute episode.  So as soon as the TV was switched off each week, I became determined to implement her strategies starting the very next day. I would make a family rules list on big sheets of paper like she did and stick them on the walls, I prepared a “naughty mat” and I decided that this was finally going to be “our” week.

But what I didn’t know back then was that her methods are tried and tested on neuro-typical children NOT children like mine with an ASD. (In fact Super Nanny did do an episode with a family who had a 3 year old autistic son, and Jo Frost actually admitted that it was out of her league and called in back-up from Dr Lynn Koegel who is a renowned specialist in that field.) Ha! What most of us would give for a one-on-one specialist to work with…but I digress…

The most noteable method of Super Nanny’s that we tried, was the sleep technique. As my regular readers will know, Harley has always been a shocking sleeper and way back in the pre-diagnosis days when we just thought Harley was a difficult child, we had exhausted every method we’d heard of or read about. So when I saw the success on screen that she was having getting children to stay in their rooms and falling asleep – I truly believed that we would have him sleeping through in no time.

HA!

I couldn’t have been MORE wrong!

 Jo’s method worked brilliantly for our daughter and I know many, many other families who have also found it to be fantastic, but all of those kiddos are neuro-typical and (to my knowledge) don’t have the added anxiety issues on top.

The idea is that every time your child comes out of their room looking for comfort, you walk them back the first time and say firmly….”It’s time for bed” and then every other time following that you avoid eye contact and stay silent but you keep walking them back in until they get the message that they need to stay in there.

Well, I remember one night we counted:- 103 times we walked that child back in there! And that’s NO exaggeration. This went on hour after hour, night after night, week after week, month after month until we finally gave up and slept in there with him until he fell asleep from sheer exhaustion.

But often -as soon as one of us would sneak out…..he would wake and it would start all over again.

Well, I knew this method it was going to take time, I was aware that it is not a quick fix solution and that all kids are different, but after about 9 weeks, we resigned ourselves to the fact that we were really really crappy parents with a child who would probably never sleep!  And the sleeping issues have continued ever since.

But here’s the good news…..he has had blocks of time-often a few months long where the sleep issues have disappeared and he has slept (reasonably well) for a few nights in a row, – they are few and far between but they have happened. And all of those times have been when he is at his calmest and when there is nothing going on in his life to causes the crippling anxiety that he suffers from.

Like our time recently in America. He slept brilliantly every.single.night. But…he knew exactly what was going to be happening EVERY minute of every day and he had no time constraints, no rushing and no stress.

He shared a double bed with his siblings and apart from safety issues – there weren’t a lot of “rules” to follow. He was as relaxed as I’ve ever seen him!

Which was really surprising since I had anticipated him being a nervous wreck being so out of routine!

However…..since we’ve returned home – the sleeping issues have become MAMMOTH!

We have had hysterics at bedtime, night wandering, screaming and tears every night at all hours of the morning. The whole house has been like the walking dead because we were so darn tired!

I tried moving his bed away from the outside wall in his bedroom, I bought him a brighter night light, I bought an iPod dock so he could listen to music to go to sleep and I put a new weighted blanket on his bed.

Nope. Didn’t work.

But 3 days ago, we took a step that I have wanted to take for years but Mr P has been against: We moved Harley’s bed into Lucas’ room.  BEST thing we ever did. (Well….so far at least!)

Both of them have been excited to go to bed,  they both fall asleep almost immediately and for 3 nights in a row now – Harley has slept 11 hours straight!!!!

He tells me that sometimes he wakes up in the night but looks over and sees his brother and feels safe so he goes back to sleep.

Awwwww….

~~~

I asked the question “Should I put my boy’s in the same bedroom” on WW’s Facebook page a while back and there were a lot of mixed opinions about this topic and a lot of pros and cons were presented to me, but I figured that I would never really know if it was going to work if I never tried it.

I’ve also had people ask me why I would do that to them when we are lucky enough to have enough rooms for the kids to all have their own, but this is simply not about that.

This is about doing “whatever works”.

And right now…It does. I’m aware that it may not work forever, but while it IS working….I’m going to accept it with open arms! Our family isn’t ‘typical’ by ANY stretch of the imagination.

So….Whatever works people….. Whatever works.

A valuable insight.

I often write that I am not very good at coping in certain situations. And try as hard as I do, it’s just the way that I am made and no amount of pushing or criticizing me will change my genetic and neurological make up.

Talk to the big guy if you have a problem. I am a product of His workmanship. I didn’t self-design. I can only work with that which I was given.

And He has wired me to be a sensitive person which is wonderful at times – but also can be a REAL burden at others because I have a tendency to take EVERYTHING to heart and it eats away at me and festers long after the original wound was inflicted.

And part of being super-sensitive involves a lot of tears being shed.

Like this morning.

I had intended to go to the school and watch Ella give her speech to middle school. She was chosen as the finalist to represent her class in the heats last week and today was the big day.

I arrived early and grabbed a seat only to be handed a program and discover that she wasn’t on for another 2 hours.

I looked at Lucas and then at the 40% battery level on my iphone and realised that there was no way that I could stretch either for that long.   I made the decision to swap my plans around and go to the local shops and buy my sister’s birthday gift first.

But after I arrived at the shopping centre, my daughter’s teacher called my mobile and told me that it was moving along a lot quicker than they had anticipated and that  Ella would be on next.

I sighed and explained where I was and that there was no way that I could get back there in time so he offered to try and video if for me instead.

Oh well…..I was disappointed but knew that I couldn’t do anything about it. It was just one of those things. I did feel like I’d let Ella down though.

***

The shopping centre that I was at has free parking for the first 3 hours and then they charge from then onwards.

I knew that I would only be an hour so I parked there , and for the first time in my entire life – I took the little parking ticket with me in my pocket instead of leaving it in the car as the signs all around advise you to NOT leave it in your vehicle.

After visiting EVERY single women’s clothing shop in the centre and finding nothing suitable I gave up and decided to head home again. I took the ticket out of my pocket and checked it and realised that I had been there for only one hour and ten minutes.

Perfect – I was well under the free 3 hours.

I walked back to my car, went to get the ticket out and my heart lurched into my shoes.

I felt sick as I searched every pocket frantically and turned my handbag inside out looking for the darn thing. I couldn’t understand how on earth it had gone missing in less than a minute.

Had someone pick-pocketed me?

I was stunned.

I had no choice but to contact the security office and explain what had happened and I was confident that because the centre had only been open for an hour and a half, it was obvious that I hadn’t overstayed the free period.

They didn’t care. They made me pay $25 for a lost ticket…..

 TWENTY FIVE DOLLARS!

And I didn’t even buy anything in this darn centre!!!!

Before I paid it – I spent another half an hour re-tracing my steps JUST IN CASE….but to no avail.

 Lucas was getting tetchy by now and starting to repeat the phrase “Oh no, Mummy, no ticket” over and over and OVER again!

SO I reluctantly paid the stoopid money and drove towards the exit only to see that the boom gate was permanently raised and that the machine was broken so EVERYONE  got to drive out without a ticket anyway!!

***

You’d think I’d be angry wouldn’t you?

No…I was too upset. I pulled my car over in a far section of the car park and burst into tears.  I rung my husband and sobbed into the phone. I cried for almost an hour all up. I was so upset at myself and at the unfairness of the situation. I completely lost it.

He spoke to me gently and calmed me back down again and has rung me every hour on the hour since to tell me that he loves me. He knew that it wasn’t just these two small things that set me off. He knows that there has been a helluva lot go on in our little world this week.  He knew that my heart had been stomped on and that I was already extremely fragile.

But I have been thinking about this whole ridiculous morning since I got home again and it occurred to me that this is very similar to how my Harley explains his meltdowns to me.

•  He has told me that sometimes when bad things happen and he feels like he is going into meltdown that  he can’t focus on anything else that’s going on around him.     (Just like I couldn’t tell you if there were any people near me in the carpark – I can’t remember, all I could think about was the ticket. It was the ONLY thing I could think about).
•  He says that he feels panicky and scared.     (Even though I knew this was fixable – I was overwhelmed with a sense of anxiety that I couldn’t seem to get on top of).
•  He can’t hear what anyone is saying to him and he feels physically sick on the stomach. (I felt like I was going to throw up and I had to ask the lady on the intercom to repeat her requests and questions several times because I wasn’t taking it in).
•  And he just wants to escape. (I wanted nothing more than to jump into my car and drive far, far away from this place that was making me feel so stressed out and unhappy).

 Please note that I am not trying to trivialize his feelings or pretend to know exactly how he feels but am trying to understand him better.

And if THIS is anything close to how he feels – I have so much more compassion for him than EVER before…..it was purely debilitating and sickening.  I know it was only a $25 ticket and not the end of the world. Really I do. But it felt like it was.

But because I have had a really difficult past week and was hurt quite badly, it has made everything else that’s occurred in my life since then appear larger than life. Like a big fat magnifying glass that hovers above me.

And with Harley – it often only takes a very tiny spark to create a bushfire.  It’s rarely the little things alone that send him off…..it’s a culmination of many little things all linked together…..

And if you’ll excuse me, I need to go and remove my smudgy eye makeup before I leave the house again for the school pick up!

Thank you God for giving me this little insight into my boy’s mind….it is AWESOME!

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!

Wordless Wednesday – Jealousy

Sleep is an enigma here.

 

If only he stayed like this all night *sigh*

Everybody knows that when you have a newborn baby in the house that you’re probably going to have minimal sleep for at least 6 weeks. Actually – scrap that….Most people I know would extend that to maybe 12 months or at least until the worst of the teething months are over.

But what about families like ours where 8 years later there are still no signs of your child ever sleeping through?

~~~

Yep, that’s right, we are still waiting for that to happen with our “newborn” eight-year-old.

Of course there have been days and even weeks where Harley has shown us that it is possible, but sadly, we keep reverting back to nights like last night.  He currently takes mood stabilising and anti-anxiety meds and has done for almost 2 years now and it works really well to help him fall asleep.

But that’s not the problem. Falling asleep and staying asleep are two entirely different things.

I could probably count the number of times on one hand that he has actually gone more than a week without waking us up in the early hours of the morning.  Usually between 2 and 5am he is up at least 10 times. And when he’s awake, he makes sure that EVERYBODY else in the house is also awake.  Harley’s room is at the opposite end of the house to ours and his brother and sister’s rooms are in the middle. Sometimes he will lay in bed crying or calling out (which wakes them up) but most times he walks quietly up to our room and stands beside our bed and calls out “Mum….Dad”..until one of us throws back the covers and marches him back to bed kicking and protesting wildly and loudly so they are woken up ANYWAY!

Rinse and repeat several times per night until you reach our point of utter exhaustion.

How very considerate of him….

Today I had downed 4 coffees, a Berocca multi-vitamin drink and a diet coke by 10 am just so that I could function well enough to survive Lucas’ early Intervention Group. And that’s not only incredibly unhealthy but pretty ridiculous and desperate measures to be taking.

This morning when I walked out to the kitchen to prepare breakfast – I was presented with 3 tired, irritable and sleep deprived kids and a husband who looked like death warmed up who had opted to go into the office later than usual just to catch another hour or so of much-needed sleep.

I have been to the paediatrician about this a few times now and each time he keeps handing me a prescription for Melatonin.

So why haven’t I filled it already?

Well – because it’s expensive for one and secondly because with Melatonin you can’t give it every single night because if you don’t alternate it and have days where you DON’T give it, the child builds up a resistance and it stops working.

It’s those in between days that scare me.

What are we going to do on those days?

At least now he is falling asleep. I shudder to think what he will be like on the days after a melatonin-free night.

I have thrown the question out there on Wonderfully Wired’s Facebook Page and many parents have written their personal experiences to me and I must say that it’s been very encouraging to read.

It help to know that there are several other families out there that have a child like ours and reaffirms that it’s nothing we have or haven’t done to make him like this.

It’s got nothing to do with us not establishing solid sleep routines when he was a baby (Thanks for nothing anonymous mothering helplines).  And it is not because we aren’t strict enough with him. (Thank you too well-intentioned mothers at playgroups).

And I know this because EVERY night at 5:30pm he eats his dinner.

At 6pm he has a bath or shower,

At 7pm he has his tablet and cleans his teeth and is in bed by 7:30pm for a story without fail. And it’s always been this way for as long as I can remember.

Is it just me …or does that look like a pretty solid routine?

And 99 nights out of 100 I stick to it.

From speaking with other mothers of ASD kiddos, most spectrum children have sleeping issues of one type or another. And I have only ever read and heard positives relating to Melatonin.

So tomorrow I am pulling out that dusty script and I am marching down to our local compounding chemist and purchasing what seems to be our very last glimmer of hope.

Fingers Crossed…..

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?

Always remembered…

I am too tired tonight to write the post that’s churning through my too-full brain so I’m going to re-blog this one from last year instead.

I have found Father’s Day this year to be difficult and sad. I thought it might get easier as the years pass, but so far – this hasn’t been the case. We lost my wonderful Dad to cancer four years ago and the world lost a wonderful husband, father,brother and friend. Father’s day will continue to go on regardless and if I have anything to do with it: so will my Dad’s memory.

I am encouraging my children to give Paul a wonderful day today and thinking about how much I can’t wait to get to heaven to have a cuppa with my Dad!

Happy Father’s day to all my wonderful readers. Hope it’s been fabulous.

 

Me about 12 months old with my Daddy x

A Daddy gives his daughter away

Young Love......My Daddy and Mummy engaged.

Miss you Dad…..xxxxx