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.

Friendship and the Special Needs Parent.

You’d have to be living under a rock to be unaware of the struggles that we are having in this house at the moment; in pretty much every area. I remember being told when Harley was first diagnosed that as he got older that some things would get easier and that other things would become harder but that in one way or another, life with autism will ALWAYS present challenges of some description.

At the time I thought that it was shallow comfort but I can now see exactly what was meant by that comment.

For example; three years ago, we had a big challenge with Harley chewing all of his clothing until it became unwearable, and the vocal stimming and tics that he indulged in used to drive us mental! Even the massive anxiety and panic attacks that he had whenever I took him to a supermarket were heart wrenching and frustrating, so yeah – I guess that we’ve come a very long way since then in those particular areas.

But as the paediatrician told us 6 long years ago, things would become challenging in OTHER areas instead.

I suppose that what I’ve taken from that is the knowledge that autism will be something that will determine most of our decisions and circumstances for the rest of our lives. It isn’t something that the boys will ever grow out of, they will just learn new ways to cope with situations and discover ways and methods that work for them.

I’ve certainly had to learn to pick my battles and for the most part, I’m ok with all of that.

I’ve had my time to grieve for the futures that I thought I wanted for my boys and have allowed my thinking to be shaped by the circumstances that ARE instead of what ‘might have been’. I’ve laid down my sadness and confusion and allowed acceptance to inhabit its place instead.

There has been a lot of soul searching and tears to reach this place mind you – none of this happened overnight. You don’t live through six years of the hugest learning curve imaginable and come out the other side without enormous life experience I can tell you!

Most of the things that challenge me these days are related to other people’s opinions and ideals that they project onto me regarding my choices regarding raising my autistic boys more than my own self-doubt.

I wrote a post about three years ago when I first started this blog and outlined three categories that I have had to put my friends into to help me to realise that some people will always remain acquaintances.

Here is an excerpt from it:

Autism is a scary word. Even though it’s not contagious and it is not always an obvious disability – it is ALWAYS there.
I’ve categorised my friends into 3 main groups at the moment.

1. Those that are also on the autism highway and totally and completely “get” me and my life.
2. Those that don’t necessarily live my life but are willing to learn more and gain a better understanding of autism and can therefore support us through thick and thin
And then there’s the 3rd group:
3. The people that I had friendships with once but no longer have them due to their judgmental attitudes and refusal to see that my child(ren)s behaviour isn’t due to lazy or inconsistent parenting. There are also people that I meet that instantly go into that category …..sadly.

It helped me to deal with the fact that I had lost close friends post diagnosis because they simply couldn’t deal with my life and that I was continuing to have people who I thought cared about us keep drifting away.

That’s another part of this whole ‘things will always be hard but in different ways’ thing that I referred to at the beginning of this post.

Becoming a parent of a child or children with special needs is one of the greatest friendship sifters known to man. I don’t believe that it’s always a deliberate thing but more of a case of people just not knowing what to say or how to help.

And of course every family is different and needs vary from child to child.  I try not to react when people say “I don’t know how you do it – I couldn’t” because I wasn’t exactly given a choice in this either.

That may seem like a reasonably benign and possibly encouraging thing to say but it comes across as the exact opposite. What I hear is: “Thank God I don’t have to live your life”.

I may seem a little harsh and difficult to please here but please believe that this is not my heart. I am not angry, bitter or even disappointed in anyone but I have had to mature in this area and realise that there will only ever be a small handful of people (if I’m lucky) that will truly “get it”.

I can only speak for myself but I can honestly say that I’m not looking for friends who say the right things and devote hours and hours to checking in with me. I don’t expect that. I know that everybody has busy lives and their own issues to deal with, but I struggle a LOT with friends who only want to be around me in the good times and run scared during the heartaches.

One of the BEST things that a friend said to me recently was: “I don’t know what to say, I don’t know what to do, I don’t know HOW to help and I can’t be there for you physically but I want you to know that I care and I’m praying for you.”

That touched me so deeply.

I need friends who are willing to sit with me in the trenches (not physically – I have friends interstate, hours away and even overseas) and allow me to offload without firing solutions at me and trying to “fix” everything.  I need friends who won’t just tell me that “It’s ok, everything will work out” then uncomfortably change the subject.

I get that not everyone can handle the tears, the meltdowns and the anger that often pours out of me and I know that there seem to be a lot more of the harder times than easier ones right now but unfortunately – this is the season that we are in.

I‘ve had to delete my Twitter account, post minimally on my Facebook Page and will soon be culling a lot of onlookers from my Instagram account because I just simply don’t have the brain space to keep putting into one-sided friendships that aren’t serving me right now.

I’ve had to learn to be choosy over who I give my time to these days and instead of feeling guilty over that – I am going to be thankful for those wonderful people who are still in my life who continue to build me up and meet me exactly where I’m at.

I wouldn’t change you guys for the WORLD.

First rule I’ve adopted for my life? Be kind to ME.

Whatever it takes.

36520_578007638916198_395055781_nI heard him long before I saw him. The quiet whimpering – the faint sounds of a little boy broken. Slowly I walked down the hallway towards my son’s bedroom wanting to help him but very aware of his need for privacy. He sometimes prefers to be alone and I couldn’t know for sure whether or not he would welcome my intrusion.

As I got nearer to the sniffles I saw two little sock-clad feet sticking out from underneath the bed and I knelt down beside them. I peered underneath the bed and he (alerted to my presence) quickly drew up his legs into the foetal position and held his breath to stifle the cries. He laid there on the cold hard floor boards shaking from the effort involved and my heart absolutely ached for him.

I laid down on my own stomach and awkwardly slid my bulky 38-year-old frame beside his tiny 10-year-old one and joined him underneath his bed.  He looked into my eyes – questioning my motives and quickly covered his face with the palm of his hand like a cat who walks past you with its eyes closed thinking that he can’t be seen because he can’t see you. He doesn’t understand the flaws in his logic because he peeked out behind his fingers a few times and each time he looked genuinely surprised that I was still there!

I reached over and gently uncovered his eyes and kissed his wet fingertips. “Would you like Mummy to go away” I asked him.

He shook his head. No, I could stay.

We laid there staring at each other and the tears continued to fall from his eyes but slowly a little smile started to form on his lips and his eyes eventually started to sparkle. At that moment, I was overcome with such love and compassion for this child. He had captured my heart 100%.

I spoke to him again: “How about we climb up on TOP of this bed and Mummy can give you a proper cuddle. We don’t have to talk if you don’t want to, just cuddle if you’d prefer”. He nodded and smoothly and nimbly slid himself out in one simple motion whilst in stark contrast, I clumsily edged my way out smacking my head on a timber slat in the process causing him to burst into a fit of giggles. Sensing my chance I hammed it up with a big “ouch” and rubbed my head. It was perfect because I knew then that the ice was finally breaking.

We laid face-to-face beside each other on his bed with my arms wrapped loosely around him while he fiddled with the gold cross I was wearing around my neck. I watched him for what seemed like hours and said nothing until I could see that he was ready to interact.

“It’s just so confusing Mum” he eventually said.

“I know it is honey” I replied kissing his forehead “I know”.

Another few minutes passed before he spoke again but this time there was more volume and purpose in his voice.

“Things are not having same-ness Mum. They didn’t have a pattern. I didn’t know the next thing and it’s just so (takes a deep breath and pauses) so, well I mean (smacks himself in the head) CONFUSING!”  My mouth goes dry as I search for comforting words but he continues without my response.

“My brain is stupid, it hurts because I’m trying to be like the rest of them Mum but I can’t! It’s just no good. I can’t find the pattern. There isn’t a pattern. It’s not supposed to go like that. How come everyone else knows but I don’t?”

His face is etched with pain and uncertainty as he tries to make me understand what is swirling around in his head tormenting him so. I looked up to the ceiling and said aloud: “Alright God – you’ve gotta help me here. I need a translation. I’ve got NOTHING”.

Suddenly all the pieces of the puzzle clicked together like the dry bones in Ezekiel and in that moment it all came to life and made sense. Routine, structure, and predictability – they were all the patterns that he was talking about. He needed to know what to expect but since last weekend – when he had his birthday party on the Saturday afternoon – everything in our house has been out of sync and all over the place. There have been changes that might seem minor to most of us but to him – they are huge. For example; I have started studying again, Lucas has been off school sick, Daddy has been home at nights and Grandma went home after staying for two weeks.

All big changes for him.

The afternoons and early evenings haven’t been the same as usual and have greatly lacked anything that even closely resembles a routine as I madly try to catch up on housework and chores. We’ve eaten dinner at different times and bedtime hasn’t had the same bath-story-bed routine that he’s been used to for ten years now.

I have seriously dropped the ball. I thought back to his words:

My brain is stupid, it hurts because I’m trying to be like the rest of them Mum but I can’t! It’s just no good. I can’t find the pattern. There isn’t a pattern. It’s not supposed to go like that. How come everyone else knows but I don’t?”

Translated it means that Harley noticed that other people all seem to know what to expect and are able to adapt and manage well whenever things don’t go to plan. He enviously observes how effortlessly other children handle change and wonders what is wrong with him. THIS is where high-functioning autism can be a real pain in the butt. Even as his mother I sometimes forget that he needs so much more preparation and understanding than other children. I forget that the smallest change can catapult him into overload and I have to continue to remind myself of the most important mantra for autism parents to remember: “All behaviour is communication”.

Well-meaning friends, family and teachers often say words to the effect of: “You’ve got to stop pandering to him, he needs to learn how to manage in the big bad world sometime. You can’t always be there to protect him.” Or they tell me not to stop beating myself up for not always being on top of my game. And they’re right – to a degree. But I also think that HE IS ONLY TEN and there really is no excuse. I mean, I wouldn’t ‘forget’ to give insulin to my diabetic child. I wouldn’t remove a physically disabled child’s wheelchair and expect him to walk unaided so why do I think that removing the scaffolding of structure, routine and planning won’t affect my child who is medically diagnosed with a neurological disorder?

I don’t believe that providing the framework of structure, routine and forward planning or making particular accommodations just for him are pandering to him or letting him win – I’m just trying my absolute darndest to help him to believe in himself. One day he will have to make it on his own. It’s true that I won’t always be there and I KNOW that he will be faced with tough situations and decisions when he is older, I am not that naïve.

But for now – I will continue to meet my child wherever he is at be it on top of the mountain or underneath a dusty bed.

Because that what a mother does. Whatever it takes.

He should have been welcoming the people….

I remember the day as though it were last week. I was sitting in the reception of the large automotive distributor that I was employed at. The switchboard rang and I was surprised to hear my Dad on the other end of the phone. His voice was breaking up as he spoke through tears gently telling me the news that I knew was imminent, but didn’t want to have to ever face.

I thanked Dad for letting me know and terminated the call. I sat still staring out the enormous windows overlooking Sydney Harbour and tried desperately to make sense of it all.

My childhood friend *Josh had passed away.

The wedding that I was in the middle of planning had been the most stressful thing I’d ever had to deal with in my life up until that point. It was still 4 months away from my nuptials and *Josh was supposed to be an Usher at the church.

“He was supposed to stand on the door and hand out the orders of service” I said aloud. “He can’t be gone, he had a purpose!”

Josh was only ten days short of being exactly a year younger than me. Far too young to die. Taken many years too early.

I shook my head and tried to focus back on my job but it wasn’t long before I was on the phone to my boss telling her that I was leaving for the day. I jumped in my car and drove over to my fiancé’s office and ran into his arms sobbing and collapsed heavily on top of him.

He had only met *Josh once.

He knew how close our families were but because time had separated us all, he had only met him once. I cried at the thought that there was a massive part of my life that my soon-to-be husband would only know about through second hand tales and anecdotes. And there were 22 years’ worth of stories that held a special place in all of our lives.

***

Josh was born with Alagille Syndrome. Which is a genetic disorder that affects the liver, heart, kidney, and other systems of the body and he was never expected to live past 18 months old, so the fact that he lived as long as he did was an outright miracle. He surprised Doctors and professionals alike and I believe 100% that God had His hand on Josh’s life because he was an absolute blessing to everyone that he met.

Growing up, my sister and I spent an enormous portion of our lives with Josh’s family as our parents were all close and our Dad’s even went to school together. Many of you will remember me writing about *Hannah many times on this blog – well Josh was her brother. And remember that amazing wedding that just Ella and I flew up to? Yep – that was Josh’s younger sister who got married then.

Those 3 kids and us were all like one big blended family. We all went on holidays overseas together, we shared a majority of our meals in each other’s homes, we lived at each other’s houses and her parents were like a second set of parents to us and vice versa. We all lived in a small country town and spent most of our childhood getting up to mischief together.

We all knew that Josh had a bad heart and various other health issues. We knew he had an unusual skin colour, a smaller stature than other children his age and more food intolerances than you could poke a stick at, but to us – he was always “just Josh”.  There was nothing wrong with his brain and he had one of the quickest wits I’ve even known to date!

As kids, we never saw him as any different to us, we never viewed him as having a disability and we would have all performed and carried on if he was ever given preferential treatment! But the most awesome thing that I remember about Josh was that he NEVER complained about being unwell. Not once, not ever, not to gain sympathy, not to get attention and certainly not to get out of doing things that he didn’t want to do.

I’m not saying he was always a perfect child, I’m saying that he accepted that he was different and then just simply got on with living his life.

I’ve thought a lot about Josh over the years. The thing that keeps coming back to me is how much early training I was being given as a child for the life that I would be living as a mother to my own children with special needs. I could never have known that through watching a family that never allowed circumstances to stop them from living their best life, that I would one day learn to apply that to my own parenting.

He was my introduction to children with a difference. His parents were my amazing example of how to trust God even when you don’t understand why you have to watch your child suffer and they along with my own parents were who taught me that any child can do anything that they put their mind to regardless of what life throws at you.

Josh tackled everything that life threw at him with a smile. Or a giggle or even a big belly laugh. He was an extremely likeable character. He lived life at his own pace and wasn’t afraid to reach for his dreams, and though it’s true that he never did get to welcome people at my wedding, he was given an even more important job 5 years ago when he got to welcome my dad into heaven.

Personally – I think that it’s awesome. It gives me wonderful peace to think of the two of them up there together stirring up mischief and giggling and laughing and running free without any physical disabilities to hinder them anymore.

Josh – you will never be forgotten. Your life touched so many people and I can hardly believe that it’s been 15 years today since you closed your eyes for the last time.

Miss you mate. I expect a huge hug when I arrive up there one day.

Helping others to find their shine.

I have grown up! Now I want to help other kids to find their shine :)

I have grown up! Now I want to help other kids to find their shine 🙂

I have known for quite a while now that I have a real heart for children who are struggling in one way or another. And I often find myself drawn to them simply because in some sort of protective or maternal way; I want to rescue them.

Although I was never diagnosed with anything myself as a child, I found school very difficult both academically and socially. And I don’t admit that very often. I don’t like to go there because the school years were easily the worst years of my life.

I can attribute my struggles in learning to my poor eyesight and undiagnosed vision problems that I never realised were impacting me as much as they were, but the social awkwardness may surprise those who know me well. I had wonderful friends at school and am still in contact with a lot of them and I’m quite excited about my 20 year reunion that’s coming up in October. So it’s not that I had trouble making friends or that I was picked on or anything like that.

You see – I am often incredibly outgoing, loud, talkative and often completely over-the-top, and that’s all a part of my sanguine personality. And I have wondered for a while if I am a contender for ADD (attention deficit disorder) as I have been known to jump from topic to topic as many as 20 times in one conversation, but what a lot of people don’t realise is that I am only this way around people whom I know love and accept me.

When I first meet people, I am not really shy, but I am cautious and very aware that if I take the cap of my crazy too soon that I may scare them away. I know that some people consider me to be childish and immature at times and that’s ok; I can’t please everybody. I am just made this way and I am who I am.

In my 29 years on this planet (see what I did there) 😉 , I have only known a handful of people who understand my completely random and sometimes strange thought processes, and whilst I don’t necessarily identify with any of the characteristics of Aspergers – I know that I am quirky and unusual and have always marched to the beat of my own drum.

So this is why I believe that I love and adore children who need that extra little bit more at school. I identify with their uniqueness and I just get it.

I understand their struggles and I really want to come alongside them and make a difference in their schooling lives. I want them to one day look back and be able to say: “That Mrs C, she ‘got’ me. She accepted me and she really honestly believed in me”.

***

This past two weeks I have completed 70 hours of work experience in a high school and I have thoroughly loved every single minute of it. The kids there are just beautiful and endearing and enigmatic and inspiring and it absolutely confirmed for me that this is exactly what I want to do with my life.  At first I wondered how I would go working with children who range in age from 12 – 18 since my eldest child is only 13, but I was genuinely surprised at the ease in which I was able to relate to these kids.

Granted there were a few who had walls that I didn’t manage to break down in only 2 weeks, but even then, I believe that with more time and more opportunities to get to know them and their likes, dislikes and personal interests; I would eventually be successful in this endeavour. I believe that me genuinely wanting to help these kids, and help them to be the best that they can be is easily one of the greatest hurdles I’ll ever have to get over in this line of work.

And that’s mainly because some of these kids have made a lifetime habit out of misbehaving in order to either grab negative attention or cause you to avoid them and therefore not realise just how much they are struggling. Some of these kids think that if their behaviour turns you off; you will look past the fact that they are unable to do their work. They have themselves convinced that they are hiding their inability to do the work by drawing your attention to their disruptions instead.

I became frustrated at times in situations such as: helping a child who was struggling when another child who was completely capable of working on their own (but clearly couldn’t be bothered) would call me over when they didn’t need me at all. They were just hoping that I’d do their work for them. And of course; once I’d wasted time discovering this, I would have another task on my hands by trying to re-focus the child who really DID need the assistance.

I very quickly learned that at times like this, I needed to assess the actual request on the spot and make a snap decision as to whether it was really something they needed help with, or if I needed to communicate to them that I was going to continue to help the child I was working with and that I’d come and see them a bit later.

But it wasn’t just the children whom I learned a lot about in my time there.

I learned a whole truckload full of stuff about myself as a mother, a worker and a friend. I noticed that I started to become frustrated by “typical” or “normal” children who misbehaved during class because they were creating an unworkable environment for those children who were already struggling. I got a bit cranky about this because I just didn’t think it was fair.

But then I had to step back and look at myself and realise that I was the one being unfair. And I had to remind myself that every child deserved a fair go. Every child is important and every child needs support, encouragement and someone to believe in them. And I know I can be the right person for this job.

***

If I had to mention a downside to completing this work experience – it would be the fact that I lost my cool on far too many occasions once I was in the safe confines of my own home. This was mainly due to me not being organised enough to understand how much of an effect working full-time would have on our lives and how emotionally exhausting it can be to give so much of your heart and soul in the workplace. But that’s just a matter of implementing better planning and structure and working harder towards creating a working routine.

Personally – For two whole weeks, I ate badly, I stopped exercising and I gained a couple of kilos from stress eating. But on the whole, I would say that it has definitely shown me that organisation is paramount if I intend to forge a career in this field.

And I absolutely do intend to. This is definitely my niche in life. I am pumped, I am excited and ready for all that the future has in store for me and my family.

Blessings to all of you who have supported me this far on my journey, I hope you join me on the rest!

MWAH!

Fi x

Stilettos and Joggers

IMG_6572I was telling a friend the title for tonight’s post and we laughed about it.

We were discussing the act of walking in another person’s shoes and the difficulty factor involved when there are kids with special needs as part of the package.

I said that if the shoes you were made to walk in on another person’s journey were your own worn-in comfortable joggers – the walk would a lot more pleasant than if you were to walk the same path wearing unfamiliar and un-sturdy stilettos that pinched your feet every time you took a step.

And we agreed that as Mum’s of SN kids, we were often not given the option of footwear and were expected to sprint in heels regularly. But we’re not allowed to complain because this is our lot in life right? Somehow on some level we deserved to have more difficult children, or we were given them because “God” gives his toughest challenges to his strongest warriors (or insert any other cliché that SN mothers have been told to alleviate the speaker’s own feelings of guilt).  But the thing is – none of us put our hands up for this. This is just the way it is.

Lately – I am frequently overwhelmed with feelings of inadequacy. I constantly worry if I am doing enough to help Harley. I think about his future and wonder if he will be able to navigate adulthood or whether it will send him into frequent shut downs or worse – public meltdowns. And if he does shut or melt-down regularly – will he be able to hold down a job? A relationship? Friendships?

Last week was the school Easter Hat parade. Harley had told me in the morning that he didn’t want to go but I had a busy morning ahead of me so I made him go anyway. I turned up a few hours later to watch the parade and noticed during the event that Harley was dangerously close to losing it. As soon as it finished I went over to grab him to take him home early but knew by the look on his face that I was too late.

His class was the last one to walk around and he was on complete overload by the end. I walked him out of the auditorium and over towards his classroom when he turned to me and punched me in the stomach, he followed that up with a few kicks to my shins and some head butts for good measure. He was sobbing and moaning and clearly needed a safe place and I would have thrown him in the car if I could have found Lucas, but he had run off somewhere else and was somewhere amongst the throng of other parents and students.

I let go of Harley’s hand to take a phone call. It was Ella calling from over the other side of the school in the middle school area. She had somehow grabbed Lucas and was calling me to ask me to come get him because he was lost and looking for me. But by the time I had hung up from the call – Harley had taken of at full speed.  I tried to follow him but he was too fast.

My phone rung a second time and it was Ella again telling me that she’d seen Harley run past her and she’d noticed that he was terrified and told me which direction he’d headed in.
I eventually found him cowering inside a tent inside one of the junior school classrooms. My joggers had become stilettos again and I turned and walked out of the classroom alone and burst into tears.

Somehow, someone had alerted the head of junior school and she had gone into talk to him. Once he came out again to me she asked him to apologise to me and I was floored?

In all these years, it has never occurred to me to ask him to say sorry for hurting me whilst in the midst of a meltdown.

I just told myself that it was part and parcel of having a child with special needs. I told myself that he wasn’t in control of his emotions so therefore he didn’t need to make amends. I usually just nurse my wounds and try to pretend that it didn’t really matter.

But she pointed out that whilst he may have been unable to control himself at that time, he still needed to say sorry to me once he was calm again. She asked me (rhetorically) how he would go in the workplace if he never apologised for his outbursts. (If they happened).

I knew she had a really great point and I wondered if I had been strapping on stilettos when I should have been able to stay in my joggers all along?

Have I made things harder for myself by “allowing” certain behaviours that I would never allow from a typical child all under the guise of “he can’t help it”. Have I permitted my child to push me into a corner by not requiring him to take ownership of his actions.

Yeah….I really think I have! And discovering this about myself has opened my eyes to a whole new way of parenting.  I’m really not doing Harley any favours by not teaching him acceptable behaviour and if I continue to make excuses for him when he hurts me – how will he ever learn to treat other people the way they deserve to be treated?

It’s a tough question but one that I have had to eventually ask myself. I’m tired of running in heels.

A new year brings new things..

I learned many years ago that making new year resolutions was never something that was gonna work for me. I just don’t have the stick ability for anything.
I’m convinced I have some form of ADD or as my friend calls it: ADOS (Attention Deficit …Oh Shiny!)

I’ve never been good at finishing things that I start and I tend to give up when things don’t come easily to me. It’s not so much that I doubt myself or my own abilities so much as it is due to boredom overtaking me. Most of the time I simply couldn’t be bothered putting effort into things that I no longer enjoy doing, so usually….I quit. (And no, I’m not talking about jobs or anything in the workplace but personal hobbies etc….I’m not THAT bad!)

But thats the funny thing about parenting: Even when I’m not succeeding at it and continue hitting brick walls – I know that its not as simple as just throwing in the towel and walking away. However – having said that: I’m no Carol Brady – I still want to walk and give up at least once a week….I’m so far from the perfect Mum it even frightens me!

But here’s what I’ve discovered about myself: When rough times hit (and they do frequently when you’re raising kids like mine) I eventually get over myself and stick at this parenting gig not because I *have to* but because I *want to*. And there’s a massive difference in the two.

I have found that unless I’m doing something that my heart is truly in and am passionate about, I struggle to stay motivated. And yes…. I know that I have revealed some pretty massive character flaws here, but there you go. This is me. Take me as I am.

But the up side if all this revelation is that my kids definitely fall into the ‘totally passionate about and would do anything for’ category. There is literally nothing that I wouldn’t do for them.

Thats right: Nothing.

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My sister was always career minded. She knew from a very young age that she wanted to be a graphic designer, so she went to Uni and became one. and shes a brilliant one too. She’s a go-getter and a doer. Always has been.

I however, have never really known just what I want out of life. I’m a bit of a floater you could say. I went through a small phase where I thought I didn’t want kids but then realised that being a mother was actually the ONLY thing I really wanted.

And I loved it from the second my daughter was born. I had found my calling. THIS was what I was going to be….a stay at home Mum. Forever.

But guess what I found out? Kids grow up. They become more independent and require less of you. Even though I consider myself fortunate for having my boys need me for longer (being slower to reach milestones etc) even they with all their daily struggles are becoming more and more capable by the day.

I would still have to say though, that for both of them (but especially Harley) – their biggest struggle by far would still be managing to cope and survive in the school environment. Over the years he has had some wonderful aides and therapists assist him and encourage him to reach above what he believes himself to be capable of and I cant thank them enough for that. We have seen incredible progress due to their commitment to helping him shine. Which is why I have made a big decision.

I no longer have children at home with me during the day and December marked the ending of the 12 month break I gave myself after my baby started full-time school. I am ready to re-enter the workforce but I am not interested in just earning a few dollars in a casual job. Nor am I interested in just doing whatever comes my way, no, this time I am the one with the passion and the go get attitude because I have decided to do something that I always said I would NEVER do.

I am going to go and study to be an education support worker (teachers aide). Because I want to be the one to help other kids reach their unlimited potential. I want to be the one to give the high fives when they achieve what they never thought possible and I want to be the one to give back what so many have given to my boys. I want to do something worthwhile and combine my knowledge of special needs as a mother with that of a classroom helper.

This isn’t big for some people, but if you know me and my aversion to sitting still and studying – it’s huge!

And my heart is in this one, so I know I will see it through.

And now that I’ve put this out there in big bad blog land……there’s no turning back….eeeek!

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Dear Ann Coulter-this is who you insult.

No, I am not American, nor do I follow American politics but I have a lot of American friends with special needs children who have also been outraged by a controversy over at Twitter today after Ann Coulter tweeted this gem to the President

So wrong on so many levels.

Well Ann; These two beautiful boys of mine are both diagnosed with autism. Do you think they are retarded? Do you?

Not cool Ann. Not cool.

So do me a favour Ann? Think before you write something so revolting next time. There are so many people who you have hurt with that one comment.

If you feel strongly about this too: Come and join the blog hop over at Yeah Good Times.

Making a difference…

My Facebook status today read: 

 I just got a care package in the mail with a beautiful letter from my best friend’s Mum…….it’s so wonderful to be randomly blessed like that! Made my day 🙂

 And it DID totally make my day.

But you know what? The package wasn’t filled with chocolates, flowers or expensive gifts because Mrs M knows that this is not what I cherish the most, but instead it was filled with something much MUCH better than that!

It was filled with words, and it was filled with love….Lots and lots of both of my two favourite things 🙂

She has taken the time over many months to cut out articles from various magazines and newspapers and she has saved them up to send to me.

But these aren’t just random articles; they were all chosen with the specific purpose of encouraging me. Some are about ASD, some aren’t but each of them has a message of triumph through trials and average people achieving extraordinary things.

It really is so humbling to read this stuff and realise what a blessing my children really are.

Mrs M is ‘officially’ retired but still teaches primary school on a casual basis and in her letter she wrote of an incident that happened at school recently with a little boy the same age as Harley who is also on the autistic spectrum. My eyes welled up with tears as I read about how this little fella had a big meltdown and started kicking, punching, biting and screaming at her because he wasn’t coping. And this all occurred because he ‘thought’ he had lost at a game.

She wrote that she remembered reading in my blog that the best thing to do in situations like this is to stay calm, speak quietly and remove the child gently from the scene so that they can gather themselves and calm down. She remembered that trying to punish or discipline a child in circumstances like this is not only futile but so so wrong because the child is not being ‘naughty’.

She then wrote that later on when he came to apologise to her that she was able to convey to him that she understood that he wasn’t angry with her but that he aimed it at her because he didn’t know what else to do and she just happened to be there. She told him that she understood that his anger overwhelmed him and he lost control in the moment.

(On a side note: I hear of situations like this happening time and time again to children on the spectrum and it breaks my heart to hear them spoken of as “bratty”, “spoiled”, “naughty” or “badly parented” kids, ESPECIALLY when I hear it from teachers or professionals in the educational system who have clearly no personal understanding of ASD. I can’t help but wonder if these people actually lived with a family affected by the many manifestations of ASD for even a day, would it cause them to maybe change their opinions?)

But thankfully, that is not the case here.

I read the quote below on a Facebook page called Single mothers who have children with autism and  it’s attributed to Laura Tisoncik.

And it says:

‘The difference between high-functioning and low-functioning autism is that in high-functioning: your deficits are ignored and in low-functioning, your assets are ignored.’

Think about that: To put that quote in the context of the above story…..I’ll dissect it for you all.

ALL disorders on the autism spectrum both high functioning and low functioning share the exact same core deficits . It’s called the Triad Of Impairments and it is made up of:

  • Social and Emotional Interaction
  • Social communication and Language
  • Imagination and flexible thinking

 Now Because the little boy in Mrs M’s story has Aspergers (which is high-functioning autism)….his deficits are ignored.

Put simply – people could look at him and see that he LOOKS normal and wrongly assume that he must therefore BE normal and place unfair expectations on him forgetting (or being unaware) that he has impairments in all 3 major areas of social interaction. So his deficits are ignored because they aren’t obvious.

And because I don’t have a low-functioning child – it wouldn’t be fair for me to write anything about perceptions or realities here because I will never understand it like a parent of one of these beautiful kids so I won’t even try.

So back to Mrs M….

I was so incredibly touched by her story. What a remarkable teacher she is and how excited I was that someone read the words of a simple stay-at-home Mum and didn’t disregard my advice because I am not university educated or professionally qualified in autism. I’ve always said that I may not hold any degrees or have any medical knowledge per say but I know my child more than anyone else on this planet and this THIS is why I continue to write about my family on the world-wide-web.

THIS is why I put us out there for all to judge in the small hope that even one person would learn that individuals on the autistic spectrum are worthy of the extra time and effort that it takes to learn more about how to best parent, live with and befriend them. 

Kids like mine are amazing but all too often they are misjudged, misunderstood and grossly underestimated.

There needs to be more Teachers, Doctors, Health Professionals and Community Workers out there like Mrs M who are teachable and willing to listen to parents. And I for one am not going to stop writing until I’m satisfied that I’m being heard 😉

I seriously love this kid…..how could anyone not want to learn to understand more about autism.

Where to draw the line….

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

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

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

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

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

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

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

Wouldn’t I feel like total crap then?!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Have a great weekend all xx