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.

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:

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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?

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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 🙂

Just don’t get too comfortable….

I think I may have written this post maybe 4 or 5 times over the past few days, but every time I’d read it back, I’d be unhappy with it so I’d delete it and start again.

I just can’t seem to write out what I need to write about without giving away too many details so I will only say that parenting an almost teenager is on par with raising autistic boys at the moment.

Holy hormones Batman!

Even my Mum has admitted that she didn’t have to deal with this kind of stuff when we were growing up. I guess times have changed and there are a lot more temptations out there for kids these days…sigh…

So yeah….things have totally sucked here. And no, I don’t believe that I’m being melodramatic either.

I have really struggled with guilt because I KNOW that Ella puts up with a helluva lot more than the average 12-year-old but I just can’t help the fact that the boys both require a lot more attention at the moment. So I have been feeling very torn.

And on top of that: it seems that Harley’s OCD has increased AGAIN, and frankly – he’s starting to unnerve me with his ever-increasing rituals.

I can handle the obsessive hand-washing. And even the counting of his steps is something I can learn to live with. But the vocal stimming and the repetitive questions that he needs to hear answered in exactly the same way each and every time – added to the irrational fear that he will cause harm to his family if he doesn’t do what his ‘stomach’ (?) tells him to that it will result in one of us dying….well that about tips me over the edge.

I mean seriously….it is becoming a huge problem for all of us and I’m staring to become unhinged. Its like living with Melvin from that dreadful Jack Nicholson movie “As Good As It Gets” but much much worse.

And he’s only 9.
Sheesh!

On a happier note, the boys both survived school photos and a fire drill at school this week with minimal after effects which is wonderful progress as far as I’m concerned!

And I have had my Mum here for the past two weeks so there have been an extra pair of hands to help me which is fantastic – except when they are needed to soothe frazzled children or hug an emotionally distraught Fiona.

But it’s all good.

Just don’t expect a coherent response from me for the next couple of weeks while I settle back into the chaos that is my life. Yep….Mum flies home tomorrow…..

But its okaaaaay…. I’m going to take deep breaths then count to 1 gazillion and then take more deep breaths. If you need me….I’ll be the one in the corner rocking and sucking my thumb!

Nah..just kidding: God will get me through.

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Sanity comes at a price.

It was my birthday last week and my Mum said she had NO idea what to buy me so instead: she took me shopping!

And one of the things that I’ve always wanted was one of those little CD walkmans (Discmans) and some bright funky headphones. So she bought me both and I was absolutely STOKED!

(I think I may have been just as excited as I was when she gave me my very first Walkman when I was a teenager… Ahh…..the memories!)

I wasn’t sure if we would even find one in the shops because they are almost obsolete now with technology advancing the way that it is, but I was determined to find one all the same.

The main reason that I really wanted one was because I have a lot of teaching CDs that I’ve never had the time to sit down and listen to, and it would take me forever to load them all onto iTunes so this seemed like the next best thing to overloading my iPod.

Guess what? Not only did I find one, it only cost a low $44! Nothing like the hundreds of dollars that they went for when they first hit the market back in the 1980’s!

And there is an added bonus to these as well: They block out the incessant whining, screaming, crying and moaning that is an unwelcome constant in this place.

And for me…..you can’t put a price on that kind of peace.

Things have been more than a little rough around here lately. We’ve had problems with all 3 children on different levels and we have struggled as a couple to see eye to eye.

Like I said: Rough.

This week alone we have had some pretty huge fall-outs and meltdowns and Harley’s OCD quirks seem to have returned with a vengeance as have the sleep issues.

In fact, Mum and I were giggling today as we recounted the story to Paul of the night last week that he worked late and we spent literally hours trying to get Harley to stay in his room and sleep.

He had come out so many times one night that I finally resorted to piling up 2 heavy wooden chairs, 2 large suitcases, a cot mattress, a beanbag and cushions in front of his door to stop him coming out and even that only worked for a matter of minutes.

Mum and I took turns walking him back into his bed, reading to him, sitting with him, praying with him, brushing him and rubbing his back only to have him continue to refuse to remain in bed.

Lately, his OCD has extended to his walking in the sense that he has an uncontrollable urge to retrace every third step that he takes and he has to walk the perimeter of each doorway of every room that he enters before he can calm himself enough to actually walk inside. So walking him back to his room was made even more of a challenge by that!

He washes his hands literally 60 times a day so that they bleed and are raw and tender.

OCD in full swing is like something out of one of those movies where the audience laughs at the ridiculousness of the scene.  I remember watching movies such as Crazy People where the characters seemed so far-fetched that it really was quite laughable, but little did I realise back then just how debilitating living with OCD can be for not only the sufferer but their immediate family members as well.

My little Harley often complains that his brain is “full” or that it won’t slow down which causes him great anxiety and angst which usually results in him self harming in some way. (Like the excessive hand washing).

And lately, I think I may have had some insight as to what having a ‘full’ brain might feel like because I have had trouble getting my brain to engage when I need it too.

It has been sluggish but also frantic and somehow all at once?

I have struggled to make decisions (even more so than usual) and have desperately wanted to just escape and get away from everyone and everything.

Simply thinking straight has taken a lot of control and honestly it really seems completely futile because nothing….NOTHING is in my control at all right now.

But in saying that: There is a major difference between Harley’s autistic-ally wired brain and my neuro-typically wired one:  And that is the ability to switch off thought loops and obsessions at will.

I can choose to not think about things that overwhelm me. I can choose not to allow thoughts to override common sense and I can choose not to act out on impulsions.  Right now – he can’t do any of that.

I believe that he will one day be able to do this as well, but it will always be more of a struggle for him because of the way he is wired.

The good news is that he is wired to be superbly focused and intimately knowledgeable about his chosen interests. And this will help him to be amazing at whatever field he chooses to work in when he is older, but the downside is that he will have to learn how to just be.

He will have to learn how to slow down his thinking to give himself and his brain a rest once in a while!

He just needs to find what works best for him.

Writing it out and listening to music and teaching CDs are what work for me. Speakers such as Bill JohnsonDanny and Sheri Silk, and Joyce Meyer help me re-focus and replace the confusion with healthy thinking.

And this is why I so desperately wanted my Discman…..$44 is a very small price to pay for sanity I think.

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!

😀

How To Talk To An Aspie.

People often tell me that Ella is such a great girl/sister/daughter, or that Lucas makes them smile/laugh/giggle. And it makes me happy as a mother to hear feedback like this, but it also makes me really sad on another level.

Because; I rarely get reports like this about my precious little Harley.

And occasionally, I permit myself to think about the possible reasons for this and become sick to the stomach as I consider the possibility that I did this by blogging about him.

Have I used this platform to paint an unfair and inaccurate picture of him? Have I magnified the not-so-pleasant parts of autism therefore causing him to be branded as a troubled child?

Well. No. I don’t believe so.

I spoke to my Mum about this and she pointed out that she has read every single post I have ever written and assured me that the major theme that shines through them all is total compassion and unconditional love for my sweet boy. And I believed her because I KNOW that I never once have tried to vilify him in any way.

Harley is a challenge yes – but he is not a bad or naughty child. But sadly, there have only ever been a handful of people in our lives that have bothered to get to know the beautiful loveable little Harley that lurks beneath the aggression and aloofness. A lot of people simply refuse to look past the often sulky, highly anxious and sullen faced boy that he so often presents to the world.

But I’m here to say that he is special, he is a joy and a remarkable example of God’s grace and perfect workmanship.

It occurred to me a couple of days ago when talking about all of this to a friend, that this is more than likely a case of other people not knowing HOW to talk to him or respond to the sometimes awkward interactions with him. It’s highly probable that a lot of friends are unsure of what to say or how to say it and are afraid of causing offense so opt to play it safe by saying nothing instead.

And hey…..I totally get that!

But Harley is extremely intuitive even without being skilled at reading body language or facial expressions. He knows instantly when someone is uncomfortable around him and he responds accordingly.

So I thought it might be interesting and possibly helpful to write-up a short list of do’s and don’ts when interacting with MY aspie.

And my disclaimer up front is that I don’t profess to know all there is about aspergers or how each individual differs, but I can give an insight into MY aspie that no other could, so bearing that in mind….each point will be written ONLY about Harley but a lot of them are transferable to other children on the spectrum as well.

So here goes, I’ll try to keep it short 🙂

DO

  • Acknowledge Harley by using his name when greeting him. Sometimes – particularly if you’re in a crowded environment or noisy area – he will be overwhelmed and not listening when you speak. Hearing his name will alert him that you are talking to him.
  • Repeat the greeting if necessary. He possibly didn’t hear you.

DON’T

  • Take it personally if he grunts/groans/scowls or snaps at you. It’s more likely that he is overloaded sensory-wise than being oppositional.
  • If he refuses to answer – don’t push him. It may seem that he’s being rude, but I’ve learned that this is not because he doesn’t like you. There may be a thousand reasons that often even I am unable to figure out.

DO

  • Speak to him like you would any other child. He is at an age now where he detects if you’re talking down to him.

DON’T

  • Expect him to eye contact you. He is unable to speak and maintain eye contact at the same time, Just because he isn’t looking at you doesn’t mean he isn’t listening.

DO

  • Find out about Harley’s special interests and weave them into conversations with him.  This is how my Mum and now another close friend have gotten into Harley’s world. Sonic the Hedgehog opens up a part of my boy that nothing else can.

DON’T

  • Tell him that he’s a big boy now and shouldn’t be playing with Sonic/Teddy bears/My Little Ponies/Toy Story or Cars paraphernalia. Children on the spectrum often have an ongoing and lasting interest in toys or gimmicks that aren’t what society (or toy companies) deem to be age-appropriate.

DO

  • Show an interest in what he is talking to you about however mundane it may seem to you at the time.

DON’T

  • Finish sentences for him even if it’s obvious where he is going with it. This frustrates him and makes him lose his train of thought and he gets quite anxious. He needs to get sentences out fully before he can move onto the next thought.

DO

  • Follow my lead.  I have learned how to read his vital signs most of the time and I always try to cater to what I’ve sensed in him.   If I say something along the lines of: “I’m so sorry but we really have to leave NOW”, listen and respect that. Please don’t try to illicit conversation from him or tell me that “he’s fine”.

DON’T

  • Think that I’m shunning or avoiding you. I am just trying to save my son some dignity and remove him from situations before he loses control and possibly embarrasses himself.

And I have like a thousand more to add but right now, I’m going to turn it over to you my loyal readers: What would you like to add to the list and I’ll try to include them all in  “How to talk to an Aspie Pt 2”  🙂

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What I’ve learned these past few years.

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

That is the nature of autism.

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

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

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

What has autism taught you?

I am the mother take 2

It’s time for another “I am the Mother” post.  I still smile as I read the ** Original Version ** that I wrote because a lot has changed since then 🙂

These days:

  • I am the mother who is fluent in sarcasm but knows that she shouldn’t use it as often as she does.  Especially on her children who don’t understand it.
  • I am the mother  who sometimes buys treats and hides them in the house because she is tired of sharing everything else that she owns and wants just one thing for and ONLY her.
  • I am the mother who owns 2 diaries and a calendar in the attempt to become more organised but has misplaced them all  :/
  • I am the mother with the short attention span who often really struggles to focus due to her constant sleep deprived state.
  • I am the mother who really wishes she could toughen up a bit and not get so hurt by other people’s words.
  • I am the mother who definitely thinks that exercise is overrated. Come and live in this house and try to be idle with my kids around. Not possible.
  • I am the mother who wishes that she didn’t comfort eat so often.
  • I am the mother who would rather be accused of talking too much then be the kind of person that you need to draaaaaaaaaaag a conversation out of. This is who she is. Like it or leave 🙂
  • I am the mother who really wishes that school went until 5pm and that homework didn’t exist. She is exhausted from spending twenty minutes just trying to get her son to sit at the table and another 20 minutes convincing him to pick up the pencil!
  • I am the mother who secretly loves watching pre-school tv shows and misses them now that her baby has started school 😦
  • I am the mother who still cries at least once a week because she misses her Dad even though we lost him over 4 years ago.
  • I am the mother who is unable to eat just one grape. The grapes HAVE to be eaten in pairs. One on each side of the mouth. (Hmmm, wonder where Harley gets his quirks from?)
  • I am the mother who gets cranky when she’s not taken seriously. I may not have a fancy degree but I know my children better than anybody else on this earth and that should account for something…
  • I  am the mother that rearranges other people’s cutlery drawers when she visits their homes. It must go in the same order that they are laid on the table : Fork, Spoon, Knife. She doesn’t cope if they are different 🙂 And incidentally,  I am the mother who didn’t develop OCD tendencies until she was thrust in the world that is ASD and the stress that goes along with it!
However:
  • I am also the wife who deliberately stacks the dishwasher incorrectly because she thinks it’s funny to see it un-nerve her husband, and the wife who likes to rearrange his Star Wars Lego for the same reason 😉
  • I am the mother who gets to witness MANY achievements and successes in her children’s lives and is finds joy in the smaller things because for us they are HUGE!
  • I am the mother who is convinced that her children will go higher and grow stronger than a lot of people give them credit for due to the handful of people that DO believe in them and their go-get- ’em attitudes.
  • I am the mother who is thankful that God is daily giving her more and more insight into their little worlds so that she can understand them just that little bit more.
  • I am the mother who would some days like to hang up her hat and resign. Or at least have a couple of weeks paid leave. Several times a year.The mother who didn’t read the fine print before putting her hand up and volunteering to do this job BUT the mother who doesn’t walk away from somethings that she’s started until she sees it to completion.

I am feisty, I am compassionate and I am a fighter.

My children will not fly under any radars and they will not go through life feeling like failures.

What kind of mother are you?

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  😉

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?