Not that kinda mother.

img_7617There’s a certain kind of clarity that comes from being 40. Well, er – 41 actually but I’ve stopped counting. I have decided that I’m not going to get any older, Ima stop right here at this age.

Well, last year’s age, but you know what I mean.

And by clarity, I mean, self-awareness. I seriously could no longer care less what other people think of me.

Yeah, that’s a lie too. I WISH I didn’t care but my emotions preeeeetty much rule this girl.

Yep. Always have done- probably always will do.

And that’s ok.

Anyway – as I was saying, I’ve learned a lot about myself in these past few years and I’m gonna write about it here so I can read back on it the next time I’m in full blown self-hatred mode and rediscover why its ok to be me.

Firstly – I am aware that I am different to most mothers. I am not great at the whole example setting thing.

My teenaged daughter is usually the one telling ME to mind my language and it’s usually her asking ME to get a grip when I lose it. And my boys have seen me in a puddle of tears on the floor holding onto a glass of wine for dear life and then been there to comfort ME more times than I care to admit.

But here’s the thing: my kids know they could rely on me to be there for them no matter what happens, and that I will love them regardless of anything that they could ever say or do.

So I’m calling that a win. I’m not always perfect, but my love for them is.

I may not always operate in complete coping mode but I am capable of being what they need when they need it most and that’s what is most important.

I don’t always make the best decisions when it comes to parenting but I do always apologise when I stuff up.

That’s also important.

Secondly: I’m a better mother when I spend (a metric crapload) of time away from my kids. And THAT’S ok to admit too. It doesn’t make me a bad mother; it makes me real. Not all mothers want to spend every waking moment with their children climbing all over them and obsess about every tiny aspect of their children’s lives. We are all different. I for one go stir crazy when I’m not afforded enough “Fi” time.  And the result of that’s not fun for anyone. BELIEVE me. Working outside the home with long hours is what keeps me sane and helps teach my children the independence that they may not have learnt had they not have been forced into it. I’m not gonna feel guilty about that anymore either.

It’s wonderful that some people can post all over social media about how much they LOVE school holidays and simply ADORE having their offspring home and post album after album of beautiful photos of the amazing artwork, craft creations and outings they have done with the neatly dressed, intelligent, well behaved children, – but that’s not me (or my children) either.

No.

Not even close.

It’s taken me a loooooooooong time (and I’m not there yet) to be ok with the fact that I am not like those mothers.

I abhor craft, I don’t have an artistic bone in my entire body and going ANYWHERE further than the corner store with two autistic boys makes me want to stab myself because it is a hell that most people won’t ever fully experience.

And here’s why:

My kids have zero executive functioning skills. Know what they are? They are the skills that allow kids (or adults) to exercise mental control and be able to regulate themselves.  These skills are easily learned and eventually instinctive in neurotypical (or normally wired) individuals and most kids have them down pat by about ten years old.

And by self- regulate I mean, to be able to make decisions for themselves, to instinctively understand what is expected of them in public places and to know how to self-entertain, behave appropriately and in their own best interest.

Put simply:  because my boys are autistic and don’t yet have these skills mastered, a simple outing usually ends in one or both of my boys hitting/punching/kicking/poking/slapping each other in the nether region or screaming out something to the tune of:

“I’M BORED AND HUNGRY AND I HATE YOUR HAIR MUM AND YOU SMELL LIKE BUTT AND YOU’RE THE WORST MOTHER EVER BECAUSE YOU WONT BUY ME A NEW GAME AND WHY CAN’T I HAVE THIS CHOCOLATE AND WHY CAN’T I GO TO THE TOILET RIGHT BLOODY NOW AND WHY CAN’T I GO HOME WHERE MY PLAYSTATION IS BECAUSE YOU KNOW I HATE GROCERY SHOPPING AND WHY ARE YOU SITTING IN THE CORNER OF THE SHOP ROCKING AND SOBBING MUM WOULD YOU LIKE ANOTHER WINE?”

Or, you know, something like that.

And when I remind myself that most mothers stop dealing with toddler tantrums at around the age of 5 and that I am still dealing with them in 10 and 13 year olds I remember to stop comparing myself to the mum who took her four beautifully dressed children on a thirty six-hour car trip to see the beach on the other side of the country and stopped at every boutique café along the way because that isn’t – and will never be – my life.

Plain and simple.

It’s not even comparing apples and oranges but instead comparing apples with mutant kiwifruit cross bred with an exotic rambutan and bitter melon (they’re real fruits – google them).

But I don’t want you to feel sorry for me. Just don’t judge me for not being even close to having my ducks in a row.  In fact, living this ridiculously insane existence has afforded me a sense of humour that I never knew I had before, and it’s taught me to never ever EVER take anything at face value.

There is ALWAYS more going on in everyone’s lives than what they post on social media.

I’m learning not to compare my off-the-planet home life to Susie homemaker and have come to the realisation that not everyone is as brutally honest as I am.

I may scare a lot of people off with my honestly because it’s often confronting and raw and uncomfortable, but it also filters out anyone in my life who isn’t willing to stick with me through the darker days and has shown me who I can trust and who only wants to be my friend for what they can get from me.

So thankyou to anyone reading this because it means that you’ve stuck by me and I love you and appreciate you more than I could ever convey.

Have a great weekend all. I am spending mine taking my son to the hairdresser to fix up the home hair cut he gave himself (those darn executive functioning skills to blame again).  Or lack thereof.

Haha.

You raised me right.

Hey Dad,

You would have turned seventy this month. That’s right 7-0.

Seventy on the seventh.

I still remember your face when your walked into the restaurant for your surprise 60th that Mum threw for you.  I remember the tears of gratitude that filled your eyes as you looked around the room and saw all your family and friends sitting there just to celebrate you. I never imagined that it would be your last big party.

To be honest – I am still pretty angry that you had to leave us.

I know that eight years on people are probably thinking that I should be past the anger stage by now, but every now and then it comes in like a giant tidal wave and completely wipes me out with such intensity.

And I never ever see it coming so I’m never fully prepared.

I never used to swear this much. And I never used to struggle with the massive anxiety that I have had ever since the strongest and most loving man I ever knew closed his eyes for the last time on this earth.

Death really sucks big ones.

Right now, it’s Sunday afternoon and I’m sitting in my driveway in my car that’s got an empty petrol tank that I couldn’t be bothered filling.

The engine is on and I expect it to die very soon but I need the air conditioning turned on because I can’t open the windows due to the shouting I’ve been doing, and the manic banging of my fists on the passenger seat in total frustration.

Its all slightly insane but oddly cathartic to be so geographically close to my family but so far away emotionally.

They haven’t found me yet and I’m not ready to go inside and adult or parent. I want to get this out of me before I explode and end up hurting someone else by reflex.

The grief is crippling me at this moment and I just don’t know what else to do with it so I’ll scream until I lose my voice or one of the neighbours calls the police.

I kid of course .. Writing to you is calming me. It’s helping me feel heard and valued.  It’s allowing me to purge this anger a little and make room for the peace that my soul craves.

I’ve become a bit of an expert at pretending, but Mum knows the truth. She wants me to go and get some grief counseling.  But I just don’t know that I can ever trust another counsellor again after the marriage counselling went catastrophically badly and almost ruined me.  Ruined us – ruined my hope and my belief in human nature.

I want to go back on the medication that I despise because I need to once again be numb.

I need to not feel so much and I need to be able to function again.

I’m going to be ok Dad, don’t worry about me.

But I would give anything to have you put your arms around me one more time and tell me that ‘God’s got this kiddo’.

Because Sunday’s are always the worst day of the week for me. I just can’t do church anymore – I can’t keep pretending for the sake of not making other people feel awkward at my outbursts.

So I’m going to sit here in this hot car and wait for Jesus to come meet me where I’m at.

Because that’s what you would have told me to do. Because you raised me right .

I love you. I always have and I always will.

image

This was your 40th dad. The age I am now

 

Mind Jumble…

I’m constantly dreaming and wishing for things to change but still not even sure

what it is that I want – or even what it is that I’m feeling.

So many emotions all swishing around in my head – all of them unnamed 

and unable to be distinguished from one another.

*

Everything is just tumbling around inside on a continual spin cycle.

Sadness mixes effortlessly with happy memories,

joy wraps itself around pain and nothing makes any real sense at all.

Like a load of dirty laundry my head is turning over thoughts,

and trying to remove damaging stains in any way that I can.

*

But there is a strange comfort I can feel even in the midst of my turmoil.

A sensation of complete peace – a comforting blanket of protection

that settles me and causes me to believe that it’s all going to be ok.

I don’t know how. I don’t know when – I just know.

I know that my God will find a way.

Photo on 21-06-13 at 4.55 PM

MY kid is spectacular!

Today was a good day.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

  • Attending the carnival for the first time.
  • Catching a bus with lots of other children.
  • Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

IMG_5731

God bless her – she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change.  But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

  • He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.
  • He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.
  • He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

IMG_5729

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching 🙂

Turning hate mail into love letters.

Today was the last day of term three for my children and they now have a 2 week holiday, so I wanted to surprise them by making a delicious afternoon tea to celebrate. I baked a beautiful cake and some biscuits and carefully peeled and cut some fruit into bite-sized pieces. I laid it all out on the outdoor table so that they could enjoy a picnic afternoon tea. They were thrilled….Or so I thought.

I went back inside to stir tonight’s dinner in the slow cooker and then my phone rung so I went to answer it. Mid way through my conversation I heard a large crashing sound so I looked out the window in alarm and was far from impressed with what I’d just seen. I immediately excused myself from the call and slammed the phone down in anger.

I flung open the screen door and marched over to the front fence to see both of the boys standing on the wheelie bins with the remains of afternoon tea on the ground around them. I stood on my toes and looked over the fence to discover that they had thrown every last piece of the food I’d lovingly prepared over the fence including my plates and glasses.

Oh…and that crash? It was a HOUSEBRICK that they threw onto the driveway that broke into little pieces and smashed our pavers. Thank God that none of the neighbourhood kids got hit in the head! I was livid but surprisingly calm.

I grabbed both of the boys by their collars and marched them out the front and watched until they picked up every last piece. As a consequence, all of their computer and Wii privileges were revoked and I then made them go back inside to shower and get ready to go to bed. It was only 4:30pm.

Harley screamed at me, kicked the door and clenched his fists in anger while Lucas threw himself down on the ground and sobbed.

Loudly.

I tried my best to ignore them until I could get the motivation to force them into the bathroom to shower. But Harley stomped past me and grabbed a piece of paper off the computer desk. He then grabbed a pen and started drawing a picture. He dug the pen firmly into the paper, scratching the table as he did so. He glared at me and told me to get out of his way as he stormed up to his bedroom to tape his “sign” to his door.

His ‘sign’ was a picture of a woman and a boy with a speech bubble coming from the boy’s mouth. He was telling the woman that he hated her and the words:  ‘Mums arnt alod in my rom evr’ were at the top of the page.

A hallmark card I was given.

I glanced at it briefly and then walked out to give him time to calm down. I returned about twenty minutes later and sat on the edge of his bed and told him that I was very sad.

“Well you should be!” he replied angrily. “You are such a mean mother and I don’t want to live with you anymore”. I willed my face to not show my own anger and hurt and replied in a steady tone: “Ok you might think that, but I love you even when you’re being horrible and angry”.

 He rolled his eyes and mumbled something indiscernible. I stood up and walked over to his door and took the picture down then sat back down without saying a single word. Then I looked at him and then back down at the picture and then back at him a second time.

He grimaced and then put his head under his pillow and I knew then that I had him exactly where I wanted him. He was experiencing remorse. And this is a HUGE step in the right direction for him. Once I’d seen the slight flicker of emotion in his eyes, I started to speak.

“This is a great drawing”.  I said and he peeked one eye out from underneath the pillow.

“I can see that you have drawn a woman and a little boy. Is that you and me?” I continued.

The pillow moved a bit more.

 “But I can’t understand something about the little boy. He looks mad…really mad but I don’t know why?  I paused for a minute.

“Do you know why he might be mad?” I asked.

Harley sat up and looked over at me with a shrug of his shoulders but still refused to talk. “Well, I guess I’ll never know then”.  I continued with a shrug of my own shoulders. “But I know why that Mum is sad” I said. He looked up at my face so I continued.

She is sad because her little boys threw away all the lovely food that she made for them. And they threw bricks over the fence and were being very naughty. And she’s sad because her little boy yelled at her and told her that he hated her and got very angry”.

I looked over at him and he had his head down. “I wonder what the little boy should have done when he realised that he was angry? Maybe he should have taken a deep breath and counted to ten. Or maybe he should have gone for a walk around the house until he calmed down. Do you think he should have said those mean things to his Mummy?”

 He shook his head slowly.

“So what do you think that the little boy should say to his Mummy now?”

 He put his head down again. “He should say sorry to her”.

 “Yes”  I answered. That would be a great idea.

“The little boy is sorry”. He whispered back and leaned over and hugged me.

“And that Mummy is very proud of her son for apologizing”. I answered.

I gave him another hug and walked out of his room. He came running up behind me and ran straight past me to the kitchen to grab another pen. He sat down at the table with his drawing and started to alter it. He added a picture of Paul, Ella and Lucas and scribbled over the speech bubble.

The sign now reads: ‘Mum and Dad and Lucas and Ella ar al alod in my room evr’.

And then he handed me another scribbled note. This one said simply: “I love u mum, yor the best mum evr.”

***
So why am I excited by this enough to write a blog post about it? Because this is some major progress right there! Children on the autistic spectrum have difficulties in understanding and expressing their emotions.

Most of the time with Harley we only see happiness or anger and nothing in between but by talking with him in this way, I allowed him to discover why losing his temper was wrong without coming down heavily on him.  I deliberately didn’t overwhelm him with words or yell at him (even though I was furious) because I knew he’s go into shut down if I did.

By using the little boy and the lady that he’d drawn as characters in my story, I was able to acknowledge that there were emotions that needed to be dealt with without him feeling that I was attacking him personally. I was able to address the whole situation from a less threatening angle and help him to discover a better way to react in situations that anger him all by himself.

And he learned another valuable lesson today. Consequences.

He went to bed tonight chanting to himself: ‘If I am naughty, I don’t get to do things that I like’ as if he was trying to memorise it for further use.

So yeah…..we are certainly covering a lot of exciting ground here!

Next post: Learning about consequences.

Freshly pressed or freshly stressed?

Taken from the WordPress home page

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

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

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

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

See… I’m considerate like that 🙂

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

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

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

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

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

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

Which leads me to my point.

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

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

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

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

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

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

We are all in this together after all 🙂

Depression……

Tumbling, Jumbling,
Crowding out my brain,
So many memories,
They’re driving me insane,
.
Too much pain,
Too many thoughts,
Can’t process anything,
Out of good retorts,
.
Wishing, Hoping,
Willing them to cease,
Please leave me alone,
And give a girl some peace!
.
Need some space,
Need a real break,
All this crap is,
More than I can take,
.
Fumbling, Mumbling,
Wanting to be heard,
It all comes of as babble,
And makes me sound absurd,
.
So darn tired,
Want to go to sleep,
Wake me when it’s over please,
And leave me in this heap.

Autism, haircuts and a mother who wants to run away!

I looked at my boys on Friday when they got home from school and realised that they were both long overdue for haircuts. I decided that it would be a good idea to get them done over the weekend because then I would have Mr Patient around to help me. But yesterday he had to go into work, and what was supposed to only be a few hours turned into 13 so he obviously wasn’t able to come with us.

Now, I’m not totally stupid – I wasn’t going to take all 3 kids out to a crowded shopping centre by myself so I wisely waited until today (Sunday) instead. I figured that the boys would be fine with the change of plans. And yes, I know what all you autism parents are thinking right now!

Silly SILLY girl!

Normally I would have written a social story or talked them through this minor change at the very least. And I should have learned from the numerous times that I have done silly things like this before – that changing plans without prior notice NEVER goes well.

Anyhoo….

**

We pulled up in the car park and before our seatbelts were even undone, the tears started.

It took Mr Patient almost ten minutes to coax the already-past-it Harley out of the car.

But getting him to walk wasn’t going to happen, So he had no choice but to carry him.

We arrived at the hairdressers and she asked the boys who was going to go first. And before they could answer: Harley took off.  He literally ran for the hills as fast as he could go. As you do when you have sensory processing disorder and you are confronted with being stuck in the middle of a crowded centre with strange noises, smells and bright lights.

So Mr Patient took Lucas and walked over to the hairdressers chair while I hot-footed it after Harley through the centre.

I eventually caught up to him and took my sobbing shaky little boy over down a quiet alleyway and stroked his head until he calmed. There was clearly no point talking to him. So I devised a quick plan in my head and we walked over to the nearby $2 shop where I bought him a squishy angry birds toy to squeeze. It seemed to do the trick and we managed to walk back and I was finally able to talk to him and ask him what kind of cool haircut he wanted. My distraction worked and we seemed to be right back on track again.

And finally he gave us a smile.

Not long from then, his turn came and he sat down in the special seat and (sort-of) let the hairdresser cut his hair whilst he squeezed Mr piggy vigorously. He stayed put to our delight and came out looking gorgeous.

We all realised that we were hungry so we decided to go and grab some lunch and started walking towards the food court congratulating ourselves on surviving so far.

Until we heard that tell-tale moan that we’ve come to know that means that trouble is looming. We turned around to see Harley crying and flapping furiously.

We sighed and I picked him up and carried him down ANOTHER side alley and it took a while but I finally managed to get to the bottom of this episode….It tuned out that some pieces of freshly cut hair had fallen down underneath his collar and was itching him madly. I could see that he was close to another meltdown and I knew I had to act quickly and I also knew that I had come unprepared so had to duck into a nearby shop and buy him another shirt.  I knew we’d never make it through lunch while he was in such enormous sensory overload.

So in ten minutes – with two of us holding him down and sprinkling baby powder on his neck and removing the old shirt and replacing it with the new one later – we finally made our way to the food court crossing our fingers, toes and anything else that we could think of!

But look at this:

A smile.

It was short lived because soon he started to obsess about having ‘dirty’ hands and wiped them vigorously with baby wipes whilst demanding that we take him to a restroom so that he could wash them properly.

But it was a smile nonetheless.

 

So, we gave in – took him to wash his hands and then again after he’d eaten and started to walk back to the car.

I saw this and grabbed my phone to take another snap – moments like this are precious.

And here’s the bit where I admit that I got home and burst into tears of complete exhaustion and got down on my knees and yelled at God.

Not because I’m mad at Him. Not because I think He gave us a bad deal in life but because I can’t for the life of me figure out why on earth he believes in me as much as He does.

Why does He trust me so much?

I know He will continue to give me the grace that I need to keep on keeping on but honestly, after today….I think I might go to  bed for about a hundred years! It’s all too bloody hard!

😀

I remember…..

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

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

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

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

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

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

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

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

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

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

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

I didn’t believe him.

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

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

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

And it got me all excited!

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

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

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

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

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

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

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona 🙂 X