Was it worth it? Yes, yes it was!

Occasionally, our family likes to walk on the wild side.

The most relaxed we've been for a while!

But for most regular families these kinds of things don’t seem to be all that wild because they are things that they probably take for granted and really don’t have to give a second thought to. Things that have become as natural as breathing, like taking a family outing to a live stage show as we did yesterday.

We took the kids to see “How To Train Your Dragon” and it was wonderful.

The preparation that we put into this event before even leaving the house was mammoth and it’s sometimes a mind-numbingly boring task, but one that is extremely necessary if we want to survive!

In the days leading up to Saturday, we spent time talking about what might happen and discussing what to expect with the boys.  We NEED to do this because if we don’t – we suffer the consequences in over-stimulated and inconsolable children.

In our chats, we covered things such as: crowds, smells,  loud noises, bright lights and anything else that might be an onslaught to (Harley in particular)’s sensory system.

So yesterday morning, we packed the car and reversed out of the driveway.

Cue the anxiety. DESPITE all the preparation. *sigh*.

Harley rocked, he flapped, he cried and he yelled. I was kicked in the back of my seat several times and during the 45 minute drive, we were asked dozens of times ‘How much longer’ through a torrent of tears.

To a person who is unfamiliar with autism and how anxiety and fear of the unknown can often present – it would have easily have seemed that he was being an ungrateful and spoiled brat. But I knew that he was just unsure and overwhelmed with the anxiety that so often cripples him, but even myself who understands the why’s of this behaviour seriously wondered if it would have been better to just turn around and go home.

However – one thing that we have learned is that we know that we need to expose our kids to more of these kinds of situations – as hard as they seem at the time – to help them to learn what is and isn’t acceptable behaviour in public. I often feel cruel putting them in situations like this that are difficult for them but know that the end pay off is worth it.

And it was.

They absolutely LOVED the show, and to watch the wonder on their little faces as they took in the drama and action was priceless.

And I had another example of how small the world really is. The lovely lady sitting beside me  (Let’s call her *Jenny) had a lovely teenage son who reacted to the smoke in the air before the show began. I noticed him pull his shirt neckline up over his nose in much the same way that I have noticed my own kids do it and smiled at her. We got chatting and the “a” word inevitably came up and there was a direct understanding instantly.

My how I LOVE these kind of encounters

*Jenny had forgotten to bring her son’s iPod so I was able to give him some spare ear plugs that I keep in my handbag. We swapped names and have now become Facebook friends.

So Hi *Jenny if you’re reading this!

~

After the show finished we went to a nearby park and got some fish and chips to eat under a tree. It was fabulous.

We laughed together about funny scenes and each of us told what out favourite parts of the show were. There was MUCH excitement!

I took in the moment with a mental photograph as this was as close to normal that I have seen us all in a long time. At that time, we were just another family sitting under a tree together giggling, smiling and enjoying being together. Sadly – this is quite rare for us these days and I didn’t want to ever forget that exact moment.

The park we went to was like a massive O.T. session for the boys and we spent a couple of hours watching them slide down tunnels and climb up rock walls and spin, swing and run to their heart’s content.

It was absolutely the best afternoon and I’m so thrilled that we got to spend it together. As a family. Doing what other families do. ALL THE TIME.

Eventually Harley started showing signs of reaching his limit and Lucas started flagging as well so we headed for home. We fed them, bathed them and then everyone went to bed early. Once they were all settled,  Mr Patient and I all sat down with a huge glass of wine and we crossed the day off as a raging success.

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Or so we thought at the time.

Yesterday was a huge day and it took its toll on them more than we had realised. This morning in particular was really really hard. Harley was a mess of tears, anger, frustration and tiredness.  I had to carry my almost-9-yr-old son into church and he clung to me like a baby koala. He had tears streaming down his face and I had to end up sitting out underneath a tree with him outside rocking him and soothing him for quite a while until he calmed down enough to go inside again. And it absolutely breaks my heart when he’s like this – especially when I know that I have had a large part in him reaching his limit but I know that we have to expose him to the real world in order for him to learn how to function on his own one day.

And because his disability isn’t obvious to the untrained eye – he will need to learn to adapt to different situations to survive in life and gradually, we are helping him to understand this.

And THIS is precisely what autism families mean when they say no to an invitation citing the reason “It’s not worth the repercussions later”. THIS is why we often opt to stay in our safe little autism bubble shut off from the world. We are not being exclusive, we are not avoiding people, we are doing what’s best for our kids and ultimately ourselves. But we know that eventually we have to step out for the greater good.

And that’s exactly what we did…….One small step at a time.

Hope you’ve all had an awesome weekend.

Fi x

Teaching children about tolerance.

Anyone that has been reading this blog for a while will have already have worked out that I am all about raising awareness for autism. And I spend a lot of time trying to teach tolerance so that my own children and other children and adults on the autistic spectrum can be more readily accepted into society.

It is important to me, and that’s why I put so much effort into advocating for my kids. But I am also fully aware that tolerance is not just something that everyone else needs to learn. It’s something that I have had to learn personally and something that I definitely try to teach my own children too.

Lately I have had the perfect opportunity to be able to teach my children tolerance from the other side of the fence because my Mum has been living here for almost 2 weeks now, with another few more to come. She is in a wheelchair due to a bad fall in her home and a badly broken foot. She needs to have a knee replacement on her “good” leg so crutches or a walking frame aren’t possible and her own home is filled with stairs. Her only choices were hospital, a respite home or here.

Naturally she chose to be with family. (Like I would have given her a choice!)

It all happened so quickly that I only found out the day before she arrived that she was coming the next afternoon, so I didn’t have very long to prepare the boys for her visit.  I hadn’t anticipated it being a problem because they love and adore my Mum and she is one person that a surprise visit from wouldn’t rock their boats too much. So I put it to the back of my mind and set to work preparing her room and making the house a little bit more wheelchair friendly.

I told the kids that afternoon and they were very excited that she was coming.

Well…..they were. Right up until I told them about the wheelchair.

I wondered why this was disturbing them so much and I tried to talk to them about it with no success. Harley was edgy and moody and not at all himself the next morning. He knew Grandma would be there when school finished and he wasn’t nearly as excited as he usually is.

I wondered if he was really coping as well with the surprise visit as I had first imagined? And if I’d made the right decision? My boys don’t handle change very well (as is part of their diagnosis) and it crossed my mind that I may have bitten off more than I could chew. Add to that the fact that Mum was extremely hesitant to come in the first place due to the fact that she felt she was increasing my already heavy workload, but I assured her that it would be a cold day in hell before I would let her go to a respite centre and that I WANTED her to come. (I wasn’t going to take no for an answer anyway )

***

 My fears were allayed as soon as the boys saw Mum and talked with her. It took a few minutes of observing her from afar and hesitating to get too close but once they realised that she was ‘safe’, their trepidations vanished completely.

But it wasn’t until dinner that night when Mum’s friend **Mrs Giggles who had driven Mum here, dropped a thought into conversation that had honestly never even occurred to me at all!

She offered up the possibility that perhaps the only “visual” that the boys had in their heads of a wheelchair was someone with a severe disability or an obvious developmental delay that they may have seen at a shopping centre. They didn’t have the life experience to draw on to be able to imagine what to expect with Grandma in a wheelchair. They had no previous images or memories to draw on and this idea suddenly gave me a haunting image of my dear Dad.

Not long before Dad passed away,  we all went out to a local pizza place for dinner. The cancer had spread to Dad’s bones and it was agonizing for him to even walk and the solution was for him to walk while pushing a shopping trolley (cart) into the restaurant because we didn’t have a walking frame. He winced in pain with every step and he had already started to fade away. He was a shadow of his former self and it’s one of the last times that my kids saw him alive, because a few short weeks later we were attending his funeral.

So for Harley – seeing someone unable to walk had a frightening end result. Maybe he thought that Grandma was going to die too?

I remember Harley was asking me the night before she arrived if Grandma would still be able to talk with him. And his biggest concern was that she wouldn’t be able to give him one of her famous back rubs. He couldn’t get his head around the fact that she was still going to be ‘Grandma’. He was troubled and very very nervous until he saw for himself that the wheelchair wasn’t ‘who Grandma is’. And this was a green light for me. I knew that something had clicked for him and I wanted to explore this with him further. 

I’ve  since had the opportunity to sit down and chat with Harley about diversity. We’ve discussed how people are still people even if they look, sound or act differently and he seems to have a better understanding. We’ve chatted about blind people with guide dogs, people who need a wheelchair for whatever reason, people with walking canes, crutches and frames and he even brought up the example of the child that we often see at the local shopping centre who is about 14 and still needs to wear a bib.  It was a fabulous segue into learning about people with less obvious disabilities like Aspergers.

And Grandma?…..well Grandma may not be able to walk, but she can still play board games, tickle, cuddle and rub backs, chat  (or listen to monologues) , read books and give rides on her lap in the wheelchair up and down the hallway!

Harley told me today that Grandma is still fun and exactly the same as before and this really made my heart swell because I knew at that moment that he gets it.

He has learned a wonderful lesson.  He’s learned that it doesn’t matter what you look like, it matters what’s on the inside. He’s learned that people come in all kinds of packages and that different is not wrong.

And as a mother – that makes me super proud.

**The pseudonym ‘Mrs Giggles’ comes from my wonderful relationship with her and the fact that we always seem to giggle when we’re together..I LOVE her)

The Broken Lighthouse In The Sea Of Aspergers…..

 As the mother of two children diagnosed on the autistic spectrum, I have been given the privilege of choosing to view the world through a completely different lens. And it is a choice. Many people make the choice not to look through this lens and continue to blame bad parenting or wrong life choices for what they see. But for me; this lens helps me to see and appreciate the small things that I may have never have noticed before, and it makes a lot of things clearer and has caused my focus to change dramatically.

The lens helps me to see past what regular folk might call naughtiness or selfishness and past what some may refer to as socially inappropriate actions so that I can see these behaviours for what they really are. I am a lot better now at determining the difference between autism related behaviours and that which are not. And in those instances that I really can’t tell….I tend to give the benefit of the doubt anyway.

But recently….this lens has become clouded and murky. It no longer provides the clarity that I once had and everything seems blurry and out of perspective. I have tried to clean it in vain, but as much as I polished and rubbed, everything remained out of focus and I was getting more and more frustrated as the days wore on.

It was becoming apparent that I either needed a new and stronger lens or someone who could come along and give it a better clean than I was able to. Someone who was able to peer into the lens briefly and see exactly what I was seeing but through different eyes and give me a different perspective. I needed someone like my friend to point out that the lens wasn’t the problem but it was me that had become exhausted and weighed down. And looking through ANY lens when your brain has as good as packed it in, is bound to show a whole lot of stuff you don’t want to see.

I needed this friend who was able to point out to me the good stuff which I was once again missing, because the crap that I wade through (metaphorically and literally) every day had caused me to seriously lose focus.

I’ve been complimented many times over the years on what a ‘great job’ I’m doing and how my kids are ‘lucky to have a Mum like me’  who has thrown herself into spreading awareness and understanding – and I love being built up like this – but I’m not sure that people realise that none of this comes without major effort and personal sacrifice.

Every day, I have to read all my children individually and determine what their needs are and always be one step ahead of them at all times. This is hard when they are often unable to communicate their needs and I have to translate general conversations and directions into their dialect and be the mediator between them and the rest of the world.

I foresee things that they’ve usually missed and I have to explain things that most people take for granted all.the.time.

I have had to learn to speak in a different tone and manner for each child and I need to speak to them in the way that they each understand. Autism is not a one-size-fits-all diagnosis and my kids all present incredibly differently when it comes to autism specific quirks. Throw in a spectrummy husband and daughter and the translating alone becomes a full-time job.

I was once described by a dear friend (who sadly no longer blogs) as the NT island in a sea of aspies and she was absolutely SPOT ON with that description! I constantly feel like I am the one that anchors this family and that they all just float around me randomly, lost and waiting for me to give them their specific directions. Sometimes I feel like the lighthouse on that stupid NT island warning everyone around me of danger despite how utterly exhausted I am.

Yeah – a Lighthouse is a great description, but one the is slightly cracked and with a broken flood light. A lighthouse who is no longer able to shine as brightly and one that is crumbling from the inside out. A lighthouse who is unable to manoeuvre herself off the island because the weight is just too much to bear.

This lighthouse has been desperately in need of repair and a little TLC to restore her to health once again.

All of this has gotten me to a point lately where I had to pull out and play the selfish card. I had to pull back from friendships because I literally had NOTHING left to give and I had to tell people that I was too tired/drained/miserable or exhausted to help them. A lot of people seem to come to me for help and for guidance even though I can barely cope with my own family and turning people away was hard but oh-so necessary.

I can’t keep giving out from a reserve that is completely empty. I may have appeared to be doing AOK, but inside I was suffocating and slowly and painfully dying.

Recently, a wonderful friend encouraged me to go and seek some help, so I took myself off to the Dr and broke down crying in her office. I told her that I was sleeping all.the.time and that I had no motivation to do anything. Getting up in the morning made me cry. Driving the kids to school made me hysterical and I was physically sick every afternoon as 2:30pm approached and I realised that I had to go and collect the kids again. I clearly wasn’t coping. I was desperate. I actually don’t enjoy being this way and I wanted to escape it all.

Whilst I regularly watch my son Harley spiral out of control via behavioural explosions and insomnia in times of stress, I personally retreat and sleep so I don’t have to deal with anything.  It’s a classic case of flight mode for me and fight mode for him.

I discovered that all of these signs that I was displaying, were major indicators of me being once again engulfed by major depression and I realised that I really did need professional help to get through it. My Doctor doubled the dosage of  my medication and ordered a number of tests for me to undergo. I’m still awaiting some of these results.

Even though most of this occurred almost a month ago, I have resisted writing much about this for a little while now because depression has a massive stigma attached to it. It is more than just being a little bit sad. It is not a choice and it is not a way of trying to attract attention. It is very real and debilitating but there is a major misconception out there that depression is just a negative state of mind.

No-one would ever tell a diabetic to snap out of it and that they don’t really need their insulin, nor would they tell a paraplegic that their wheelchair was an attention-seeking device, but because depression – like parenting autistic children – is so majorly misunderstood….sufferers generally suffer in silence.

Which is really sad because studies have shown that talking about your struggles and feeling heard is a major step towards gaining healing and making progress in the right direction.

This friend also taught me that hope is what pulls people through. We all need hope at the end of the day. Something to live for, something to keep us going despite our struggles. We all need someone to believe in us and we need to ultimately learn to believe in ourselves.

*******

I was crying out to God this week…begging Him to repair this lighthouse, pleading with Him to help me to keep shining out the beacon of hope to those that have been entrusted to me, when He gently reminded me that I am supposed to look to Him to be my lighthouse and that I am trying to do too much in my own strength.

He reminded me that He is supposed to be the guiding light and I am supposed to be the vessel that He shines through. And with this HOPE that I have, I can continue knowing that it’s all going to work out in the end.

John 8:12

 ¹² When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

I’ve still got the pom-poms but I shake them less these days.

This is a similar tumour to mine but about half the size of mine....image via wikipedia.

This November it will be eight years since I had life-saving brain surgery to remove a tumour that was growing too close to my brain stem. I have mentioned it on this blog several times and it has never been a no-go topic for me but at the same time; I don’t instantly tell everyone that I meet because most of the time it’s just not necessary and rarely comes up in everyday conversation.

But people often look at me and know that something is different even if they don’t know why. In much the same way as my 2 high-functioning autistic boys often look “different” in how they behave but it’s not always obvious exactly why that is.

In my case: The tumour that I had, was tightly wrapped around both the facial and hearing nerves on the right side of my head. And two major side effects of this particular surgery are hearing loss and facial palsy in varying degrees.  This palsy may or may not get better over time and the old saying that “it’s different for everybody” certainly applies here.

I lost all of the hearing in my right ear and now have SSD and I did not regain my facial nerve back completely. That’s why people I meet can tell straight away that something is different about me. I have been left with a very crooked smile and the entire right side of my face has little movement. Most of the pictures of me that you find on this blog or anywhere else on the web (Facebook, Twitter etc) have been carefully screened by me first so that it’s not strikingly obvious to the average person.

But if you were to meet me in person….you would more than likely notice the palsy even though it has improved dramatically over the years. My close friends tell me that they barely notice it anymore but I’m not sure if I believe them though!

Most of the time, I don’t let my crooked face bother me too much, but if there’s a camera around – I never give an open-mouthed smile. And if I cry (which I do a lot), it’s painfully obvious as I only have one tear duct so only one eye goes puffy and only one cheek gets tear-stained. So I try not to cry in public!  Sometimes I find myself in social situations where I meet new people and notice them trying hard not to stare at my mouth when I talk or laugh. I can see that they are dying to know “what’s wrong with her face” but I sense that they would never ask me, so in moments like this – if it’s appropriate and I’m likely to encounter them sometime again in the future – I tell them why.

The result is usually mild embarrassment for them or fascination and often times: curiosity.

I’m fine with either response but I do so love it when I get to share my story and my triumphs and blessings as a result of going through such a rotten time, because I try really hard to not focus on the icky stuff that I went through after surgery such as self loathing, depression, grief, sadness and pain but to make myself see and verbalise the good things that came from it. I’m still alive aren’t I? And that’s got to be a good thing!

I truly do believe that God works ALL things out for our good and that trials strengthen us and develop our character.

And this thinking is similar to how I am now beginning to approach our family’s journey along the autism highway.

Often if we’re out in public and I notice people observing my son(s) behaviour(s) and wonder if I should offer up an explanation for it. Part of me wants them to understand the ‘why’s’ straight away but I’ve learned that this is rarely the case anyway. I see people watching them happy flapping or twirling around in circles carelessly and I also get the tsk tsk posse when they lose it or meltdown in public. People stare at that which is different. Right or wrong – it’s human nature and it’s just the way it is.

Once upon a time I would tell anyone I caught staring – regularly in fact – but nowadays, I usually decide against it because most of the time, it’s totally unnecessary for me to tell strangers and it’s simply none of their business and would serve no real purpose anyway. And it’s not because autism is a big secret or something to be ashamed of – because if that were true – I wouldn’t have such a public blog that my friends know about. However, I don’t exactly wear a sandwich board around my neck announcing it to every passer-by that I encounter either!

The difference is that the people who read this blog WANT to read and want to know more about life with aspergers, whereas people you meet in the street often have no knowledge of autism and don’t know us personally anyway.

So why don’t I announce it as often these days as before?

Well, I think it has a lot to do with the fact that I’ve discovered that by only drawing attention to the negative side of aspergers….I was only really telling one side of the story.

So take for example a hypothetical situation like my son having a meltdown in a supermarket. Once I would’ve played the autism card and “put strangers in their place” assuming that they were judging my parenting, but now: in situations like that, I ignore the stares and judgmental glares and only answer people on the odd occasion that they offer to help. I usually say something along the lines of: “Thank you but my son has autism and is a little overwhelmed right now. He is a great kid but just not coping too well at the moment I’m afraid”.

Because if my son’s meltdown is their first ever encounter with autism, then its possible that this may be the only thing that they ever associate with autism in the future. And I don’t want people stereotyping these kids as badly behaved, spoilt or bratty because I know that they’re not.

Autism parents know that raising these kids is hell on toast some days and Mr Patient and I often scream at the heavens: “WHAT NOW” but raising these special kids is not without its rewards either.

image via wikipedia.

We all know that there is so much more to our kids than bad behaviour, temper fits, meltdowns and rigid and inflexible thinking. So I’m making it my mission to showcase the amazing and beautiful parts of autism too.

A few weeks ago, I was out for afternoon tea in a local café with my 3 kids and a close friend and her child who also has Aspergers. Her child is a similar age to Harley and all the kids get on marvellously despite their respective social difficulties. There is an understanding between them all that is really beautiful to watch. We ordered our meals and the children sat beautifully and behaved remarkably well. They laughed, we chatted, and after we’d eaten, the kids all ran off to play in the playground. Our Waiter came over and commented to my friend and I on how wonderful the children were and how impressed he was with their manners and behaviour.

My friend smiled at him and asked him if he realised that 3 of the 4 children had a diagnosis on the autism spectrum, and he was truly amazed!

I’m not sure if our well-behaved and adorable children were not lining up with any pre-conceived ideas that he may have associated with autism but he was genuinely surprised and praised us for our remarkable dedication to raising them. (Which we lapped up of course!)

Then my friend pointed out to me the importance of praising our kids to strangers and highlighting that they really are remarkable even though sometimes it’s more of a struggle for them.

But the point that I guess I’m making here is that yes – I still want to spread awareness and I’m not hiding anything or trying to gloss over the hardships, but if I only ever take the hard times as opportunities to teach about autism, I’m not being completely fair to my kids or other individuals on the spectrum.

You can be assured that I will still probably write many posts in the weeks, months and years to come lamenting how damn hard this whole raising autistic kids thing is – because one thing I’m not in – is denial. It’s definitely not all roses, rainbows and sunshine but I will try to save those rants and raves and episodes of manic rage for this blog where the people who read it understand where I am coming from and already know that I adore my kids warts and all.

But I’m going to make a conscious decision to choose my time and place for that kind of rant more carefully.

Just like I don’t walk around telling everyone who even so much as glances at me that there is a reason that I look like I’ve had a stroke or bad plastic surgery – I will save the cold hard facts for appropriate situations or when there is a relationship formed with the other party. Autism is still so unbelievably misunderstood and unfortunately, many people still associate it with tantrums, screaming and uncontrollable rage but many fail to see the loving and precious and amazing side as well.

Often as a mother of 2 children with autism I OFTEN fail to see past those tantrums, screaming fits and rage but I have the advantage of KNOWING that there is more to it than that. Other people don’t.

I will always be on the sidelines with my pom-poms and high kicks cheering on my kids and believing that they can do anything that typical children can do and I will remain their strongest advocate because I’m passionate about creating awareness and understanding for them, but I’m going to go about it in a completely different way from now on.

And if someone comments on an achievement that my child makes – I will use that opportunity to sing his praises and teach that there are no limits to what children on the spectrum can do. I will no longer use their hard and non-coping times as teaching exercises because I now see that I’ve had it wrong all along.

Is it just a boy thing or is it something more?

Sometimes I am unable to discern the difference between regular ‘boy’ behaviour, normal sibling rivalry and behaviour that is typically and consistently attributed to having an ASD.

Because both of my boys are diagnosed with Aspergers, anytime that I see them BOTH doing things that I never did as a child – it’s too easy to assume that it’s an ASD thing.

But then I talk to other parents of typically developing boys and realise that their son(s) do some of these things too and I occasionally feel like a fool because it’s more than likely just a boy thing and I’ve made it into much more.

Or have I?

I’ve discovered that as mothers of special needs kids – we deal with all the same things that regular parents do every day…..and then some. Because everything is multiplied by thousands. And I mean EVERYTHING.

We experience much higher highs when we celebrate what is considered to be a small thing to an average parent – much lower lows because our kids struggle with basic daily tasks and HUGE swings between the two extremes daily.

Take for example: running away. Other mothers of boys have told me that their sons often wander off in shopping centres and have the urge to touch EVERYTHING in sight. Their sons also have trouble keeping their hands to themselves and they often misbehave in a similar way that mine do when we’re out. It’s just a boy thing they tell me. I hear the stories of how they remember the days when they were unable to take them ANYWHERE and how exhausting it was!

But they usually follow with comments to the tune of: “But thankfully he’s outgrown that now”.

Harley is 9 this year and still runs away regularly. He obviously hasn’t outgrown it and isn’t showing any signs of growing out of it. Because for him – it’s not an age thing. Nor is it a “boy” thing. When Harley runs off – it’s because he is terrified of the noises, the bright lights, the crowds and the brain overload that all of this stimuli causes. He will run away so that he can hide in a clothes rack or to sit in a far away corner rocking backwards and forwards crying because his sensory system reaches overload so much quicker than that of the average Joe.

And he doesn’t just instantly stop crying once removed from the situation either. The tears, aggression and emotional outbursts can last for literally hours after the event.

And when Lucas wanders off  – it’s because he is drifting along in his own little spacey world and is completely unaware of his surroundings at all. He doesn’t live in the moment and doesn’t realise that he has moved away from us.

My boys don’t run off to be naughty, they just have an uncontrollable need to escape whatever is that is sending them in meltdown or they are not living in the same realm that the rest of us are!

And as for punching up their siblings: Well, that’s just a boy thing too isn’t it? – Boys are naturally a lot more rough and tumble, and a hundred times more active than their female counterparts, so I’m not dealing with anything that they don’t all encounter daily either am I?

Well maybe not. But when you see your son going pale and crying till he almost vomits from the mental exhaustion that a school day heaps on him, the lashing out and physical attacks on his brother are often a sign of much more than just a boy being silly and rough-housing with his little brother. When he is this overloaded, he is not in control of his body and the punches are his way of releasing some of the pent-up emotions from just BEING that day.

And what about boys refusing to do homework because they would rather play than concentrate and sit still?

Sure – I know many boys who struggle to do this, but when you throw sensory issues, brain overload and mental exhaustion from trying to be what society expects all day instead of who you really are into the mix….than it’s likely to be much more than your child simply refusing to do what they’re told.

And I can imagine a lot of you sitting screaming at your computer monitors now: WHY DO YOU EVEN CARE???
DOES IT REALLY MATTER WHETHER IT IS A BOY THING OR SOMETHING MORE???

And I totally understand that it may seem that I am making a mountain out of a molehill here, but it’s important to me to define the differences. I was told only today that I have got to stop using Aspergers as an excuse for my son’s bad behaviour and that I need to teach him how to behave better.

Yes – I held my tongue but comments like this from people who don’t walk in our shoes are exactly why I write controversial blog posts like this one.

Because: that kind of perception is damaging and hurtful to parents of children with “invisible” disabilities such as Aspergers as it belittles our struggles and invalidates our achievements and successes.

I read recently in >>THIS<< fabulous post that it’s like they’re saying to us that autism isn’t real. When we are spoken to in this way – we are being told that we are attention seeking super emotional freaks of parents who should just sit down and shut up.

So let me take this opportunity to point out that I am not the least bit interested in being pitied and I’m not writing this to extract sympathy from anyone, but I want people to stop downplaying the struggles that special needs parents have with their children by trying to explain it away as something that everyone deals with.

And I also want to know the differences because: If it’s something that is “just a boy thing” I know that I have little control over it, but if it happens to be an ASD thing – I can research it, work on it and teach my boys the life skills that they will need to not only survive this big bad world but to thrive in it.

And I need to know for my own sake as well. Because I need to know that not everything is my fault. I need to know that sometimes – its ok to collapse under the weight of something that I have absolutely no control over. I need to be proud of how damn hard I really am trying here. I need to be able to sleep at night knowing that I did the best I could with what I have.

Because as I wrote earlier – special needs mothers do all the stuff that regular mothers do as well…..but then there are volumes of extras that are also required on top of that just to be able to even function.

But don’t get me wrong here: I certainly don’t OWN exhaustion or frustration and I know that every mother struggles from time-to-time with their children on some level. And I’m not trying to take that away from mothers of typically developing children because I don’t for a second think that any of you have it easy either. But I know from living it personally that mothers of children with special needs feel like throwing in the towel almost every.single.day.

For us – a good day means you were only kicked once. Or we only had to throw out 2 meals instead of 3. Or that your child didn’t punch their therapist. And a great afternoon might mean that you child only screamed for 1 hour over their homework instead of 4.

Most of us would love to be able to have only the occasional bad day or moment. But we were never given that option. But we don’t want our efforts and struggles reduced to a simple shoulder shrug and a throwaway comment.

That’s all I ask

As the clock ticks…

I’m sitting here in the waiting room at the university  psychology clinic. It is stuffy and the ticking of the clock above me is annoying me to say the least. The woman sitting cross from me is chewing gum with her mouth open and there are 2 more women beside me showing each other photos of their pets on their phones. They are all making me crazy. I’m feeling my tension levels rise with every tick.

Yes , my senses are on high alert because today is the day that Harley is undergoing a cognitive and behavioural assessment. And there is a lot riding on today.

The special needs department at school asked me to get this done over 12 months ago but to do it privately would have cost us over $900. So we opted to go on the waiting list at the university where it is done for free.

And today, our turn arrived.

I am nervous and I am excited and I am very anxious. I know that it’s for his own benefit but I also know what it is going to take out of him.

I’m expecting a mentally and physically drained kiddo when he walks back out those doors and I hope that I am enough. He is going to need patience, understanding and space….a lot of space. I’m not sure that I am up for it to be honest.

 The rain pouring down on the roof outside isn’t helping to calm me as it usually does- it only makes more aware of the fact that letting him run it off in a park later isn’t a viable option.

I wonder if he will perform wonderfully or terribly. I’m kinda hoping for a bit of both to be honest.

Because if he performs well..I can be proud of him and know that I have done a great job preparing him, but if  he does badly – the results will show that he needs more work therefore (possibly) more funding and aide.

Talk about a catch 22.

 I know my boy is super smart. I know he is more than capable and that he really really wants to do the right thing. But I also know that even BEING in the classroom sometimes drains him of all of his coping mechanisms and there’s no brain power left to focus on school work.

And that’s really tough for him. He KNOWS what he needs to do but he can’t make his body and brain follow suit.

His communication difficulties make it a struggle for him to put words to his anxieties. He can’t explain why picking up that pencil hurts his fingers, he doesn’t think to tell the teacher that his ears are hurting from the marker writing on the whiteboard and it doesn’t occur to even himself that maybe the buzzing from the fluorescent lighting overhead is causing him physical discomfort to the point where he can no longer focus.

So his brain tells him to act out.

He might slam his pencil down on the table, or kick his chair out from under the desk or collapse in a heap with his head in his hands because it’s all.too.damn.hard.

Or maybe he will take flight. He may stare out the window, allow his eyes to glaze over or become engrossed in the fibres of the carpet on the rug.

This behaviour in a spectrummy child is not a sign of naughtiness or defiance. It is not because they are bored and it’s rarely because they want attention. Most of the time it is because they are overloaded and anxious and unable to express any of this to anyone.

And I get that. The ticking clock above me is driving me bonkers, I’m ready to throw something at that woman with the gum and I’m not nearly as far on the spectrum as Harley is….if at all.

One of the purposes of this testing is to determine his strengths and his weaknesses. It is to use as a tool to cater teaching styles that are tailored to help him reach his full potential.

But first his potential needs to be discovered because often with children on the autistic spectrum – their behaviour masks their potential.

And this boy is going to go a long way in life. I just KNOW it

~~~~~~~

Wordless Wednesday 29 FEb 12 Wearing the Pants in the Family

The Payment Plan

I am a huge fan of analogies. I love it when someone gives me an easier way to understand things and it occurred to me today that it’s very similar to the way that Jesus spoke in parables. That’s why I relate so well to bible stories. I have been thinking today about ‘our situation’ and the thought dropped into my head that our life is not unlike a mortgage.

Stay with me on this ok…I am actually going somewhere with this – I haven’t completely lost my mind just yet!

I was chatting to Mr Patient last night and said to him that I am aware that I DO get time away from the children and that I can’t understand why I still feel like I need a break?

I mean – It’s not like I NEVER get away – I have a beautiful friend who regularly takes me out for coffee when the kids are in school plus she meets me in the park after school with the kids as well and inputs wonderful things into them.

I also have 6 hours on my own every day while they are in school, yet I still have a strong desire to escape and get away from it all and regularly feel overwhelmed. I was wondering why this is and it occurred to me that it’s all very much like a bank loan.

Take for example our mortgage: Even though we make regular payments and cut into the principal of the loan, there is still a great big debt that needs to be paid off that only ever gets reduced very slowly and very gradually.

We are not likely to come into any huge lump sums of money; so slowly but surely is the only way that we can chip away at it.

But if we stand back and focus on the enormous amount that we still owe without taking note of the small amount in comparison that we’ve already paid – we are in danger of becoming overwhelmed, depressed and then helplessness starts to creep in.

We need to continue to make these little payments in order for the bigger picture and greater rewards waiting for us despite how insignificant they might seem.

Over the coming years, we will see the payments yield greater results and the principal loan lessen to the point where all we will see is what we have worked towards and what we have achieved. One day we will own this house and can stand back and be proud of all that we put into it over all those years.

But if we give up now and say “These payments aren’t making any difference - they’re too small” then we would never achieve that end goal.

And it’s like that with raising our children, because the small but still significant snippets of time that we put into them all adds up to a well-balanced and stable adult in the end.

And the small amounts of time that I get away from the children to be me and to refresh myself – all add up to a well-balanced and stable ME.

I have realised that if I sit back now and don’t make the most of those small amounts of time that I DO have and focus on all of the time I DON’T have to myself – I will lose sight of the bigger picture. EVERY day, hour and minute to myself should be treasured and counted as a payment towards inputting into my children’s futures. On their own they don’t amount to much but added together over the years – they make quite a big difference!

I realise now that it’s not going to happen immediately. Interest rates have risen quite high in the emotional bank at the moment, but it’s ok – we WILL get there and it WILL be ok.

Am I crazy for seeing things this way?

Maybe. But I know that optimism is a choice and one that I don’t make often enough and I’m starting to recognise that it’s one I need to make more often.

And as long as I make regular payments into the “Fiona fund”, Things will work out in the end.

One step at a time.

Deep breath.

You’re going to be ok.

Exhale.

An open letter from a frustrated mother to an over-paid Bureacrat.

If you’ve clicked on my blog hoping to see a cheerful upbeat encouraging blog post today – you will be disappointed. Today’s post is something that I need to get of my chest, things have been very trying here lately and I’m using this platform to voice a frustration that I have with the current government and those in positions of influence.

But as you read this: Please know that I haven’t lost faith in God or his miracle-working power – I know He is working in our lives and that He will make it all turn out for good , but the light at the end of the tunnel is quite dim right now and I’m writing this out as a form of therapy for me.

Feel free to click elsewhere and read a happier, cheerier post that someone else wrote if you think you can’t handle this. I won’t hold it against you….I promise

~~~

Bureaucrat : an official who works by fixed routine without exercising intelligent judgment.

Dear Mr Bureaucrat,

I don’t even know your name. You hide behind unnecessary paperwork and ridiculous rules and regulations making it impossible for the average parent to even gain access to you. You’ve been sent numerous files from several sources on our family and therefore should already know our situation.

But rather than make you sift though more paperwork and waste MORE of my precious time, let me refresh you:

We have 3 children, 2 of them are diagnosed on the autistic spectrum and we have no family living nearby at all. My husband works away from home a lot and travels interstate regularly. Most of the child rearing falls onto me and I have requested help more times than I can remember. I have had social workers submit requests on our behalf, but still you guys continue to push all of those facts to the side as you reject us time and time again for respite. I just don’t understand at all and I am getting desperate to be heard.

Do you know that our family is held together by duct tape? And do you know that this tape is getting dangerously thin?  It is fraying at the edges and it won’t be long until everything falls apart at this rate.

I seriously have begun to doubt that you and all your bureaucrat friends with your stupid bourgeois rules even care.

Are you aware that we spend an absolute fortune on sleeping, anti-anxiety and anti-depressant medications each month just so we can cope?

I’ve been told to go and talk to a psychologist in conjunction with my meds for my own well-being, but frankly: I don’t see the point. Because just talking never changes anything, I want actual physical help. I want someone to come and take my son on a regular basis and GIVE ME A BREAK.  Words are absolutely useless to me right now and mostly serve no real purpose other than to annoy me further.

Recently I have had my own medication increased. Doubled in dosage actually so that I can ‘cope’ with my load. But I’m not interested in just simply coping. I want to thrive, I want to succeed and I want to bloom. I want to be the mother that my kids deserve not the mother that they are stuck with.

Because ‘coping’ means barely scraping by and that’s just not enough. It will never be enough.

Surely with the ever-increasing rate of autism in this country SOMETHING has got to shift. MORE services need to be put in place and funded and more families need to be able to access them.

And I am not the only one screaming out for help here. There are many others who are also being crippled by the weight of carrying so much responsibility on their own. This is not just child rearing: This is parenting extreme style. And a lot of the time it is so extreme that it would frighten the pants off most ordinary folk.

Most days I feel like I am gripping onto the edge of a cliff with my fingertips while the rest of me is dangling over a bottomless chasm. We ASD parents deal with all the same issues as parents of typical children do, but then we have all the other added ASD stuff on top. We deal with major sleeping issues, toileting issues, communication issues, issues with motor skills both fine and gross, sensory issues, learning difficulties, and a host of other things. Most of our kids have a variety of letters to add to their autism diagnosis because autism rarely travels alone. Our kids also carry diagnoses like: SPD,ADD,ADHD,ODD,OCD to name but a few.

Right now, our entire family dynamic is malfunctioning and no-one in the higher places wants to touch us for whatever reason we are given THIS week as an excuse.

Seriously: This is Australia…..The “lucky” country. Well…apparently it is. I’m have to say that I’m not feeling the lucky part right now.

Mr Bureaucrat: We are tired of living in the too-hard-basket and we want out because this is just ridiculous.

No actually: it’s a big fat joke.

And while I’m on it, What are you doing about funding for autism in schools? Because last time I checked – Aussie kids don’t get anywhere near the aide that they need or deserve. It’s embarrassing to read stories from all over the world and see just how far behind we are as a country. Do you guys in your expensive suits in your leather swivel chairs with your water views and free lunches and frequent overseas trips on our tax money even care?

“Frustrated” is the word that frequently comes to mind whenever I’m asked how I am these days. So damn frustrated.

Does it have to get to the point where a child is in danger or a parent loses their mind and gets sectioned before you’ll step in? Where exactly is the line between desperate and worthy?

I’m frustrated at the system and at the exhaustion and at the lengths that we are made to go to just to survive these days.

Something’s gotta change Mr Bureaucrat , I don’t know how and I don’t know when, but it HAS to change.

Signed,

An extremely frustrated mother.

Keeping the memory alive.

It’ s been a rough week for all of us and for once, autism isn’t to blame.

Today is the 4 year anniversary of my Dad losing his battle with cancer and I know I write a tribute every year and this year is going to be no different.

But this year kinda has a sick twist to it in that my Mum is in the very same hospital today that Dad passed away in back in 2008. *shudder*.

So why is she in hospital?  Well, she fell down her stairs and fractured her foot. It is awful and made more so by the fact that she is unable to weight bear on her opposite knee and neither my sister nor I live near her so she’s having to rely on friends to do anything as she’s not allowed to drive for 6 weeks.

Thankfully she has a great group of friends and she is in good hands but if you are a pray-er, please add my Mum to your prayers for a speedy recovery.

~

Anyway, as I was driving the children to school this morning, I told them what today was and asked them what it meant to them individually.

Ella sighed and said that she missed his silly jokes and then suggested that we call Grandma to see how she is. Yep…she’s as thoughtful as ever is my girl.

Harley said: “I can’t believe I was only 4 when Grandad died” and Lucas….

Well Lucas had a reaction that really stung.

Because when Dad passed, Lucas was only 18 months old and has no memory of Dad at all.  He asked me who Grandad was and it totally broke me apart.

I am thankful that Dad got to meet all of his grandchildren but devastated that my son has no memories of the wonderful man who Dad was and the realisation that he has only ever known Grandma to live in that big old house by herself really hit me hard.

 Lucas doesn’t remember being taken to the fire station where Dad worked and having these 3 photos taken; ⤵

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And he has no memory of being chased by Dad in shops when he ran away to find mischief  ⤵

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And he certainly wouldn’t remember being given his first lesson in shaving ⤵

But I remember all of these times and much more.

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I remember Dad giggling as he tossed his Grandson in the air ⤵

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And posing mid-hug with a little Lucas ⤵

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Dad was an awesome babysitter. Well, when he didn’t sleep on the job! ⤵

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And I remember how proud ha was of all 5 of his grandchildren. I love his proud smile in this photo which was taken on the day that we brought Lucas home from the hospital.⤵

Dad: I will tell my boy all my wonderful memories of you.

Your memory will not die out with me.I promise.

I am thankful that you input so much good into me and I will make you proud.

Love you, Miss you, Wish you were still here ♥♥♥ xxx ♥♥♥

Placing down the load.

So there has been a lot going on behind the scenes here lately. I’m not ready to share any of it publicly but I wanted to blog a beautiful inspiring email that I was sent by two different friends last week that really encouraged me.

A lot of you may have read it before, but it is so good and applicable to parents of special needs kids that I’m going to share it here again for those that may not have seen it…

A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, ‘half empty or half full?’… She fooled them all … “How heavy is this glass of water?” she inquired with a smile. 

Answers called out ranged from 8 oz. to 20 oz. 

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it.  If I hold it for a minute, that’s not a problem. 
If I hold it for an hour, I’ll have an ache in my right arm.  If I hold it for a day, you’ll have to call an ambulance. 

In each case it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued,

“And that’s the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced. 

So, as early in the evening as you can, put all your burdens down. 
Don’t carry them through the evening and into the night… Pick them up tomorrow. 

So for now, I’m placing my glass of water down for a rest to get refreshed and to ease my load. It’s gotten far too heavy to hold for extended periods and I need God’s strength more than ever.

I hope all of you realise what a wonderful and sometimes thankless job you are doing and that you are not alone.

Fi x

I’m being mocked by a list!

So it’s been almost three weeks since I have been a free agent.

Three weeks where I have had six straight hours to myself, five days a week.

A while back, I made a ‘later’ list.

You know….a list of all of those little things that have needed doing but you’ve never had to time to do them? I told myself (and Mr Patient) that once all the kids were at school full-time, that I’d tackle that list with gusto.

So I sat down today with a pen and decided to tick some of them off so that I could feel better about myself, and like I’d actually achieved something worthwhile over this three-week period!

OK.

So, number one was the basket full of sewing repairs.

I have a HUGE basket full of many items of clothing such as dresses with seams to let out, skirts with hems to fix and shirts that need buttons sewn on. Oh – and Hubby’s work pants that need to be altered too.

I peered into it and realised that none of it had been touched. It has been so long that dust has settled on the edges of the basket. It was not looking good!

I sighed and moved onto number two on the list.

2. Clean out the pantry.

I opened the doors and glanced in (which is kinda funny since I look in there everyday and I wasn’t sure what I thought was going to be different this time!) and nope – it was still a massive mess of opened boxes and mismatched Tupperware containers. An upturned cereal box with a trail of nutri-grain spilling out caught my eye and I quickly slammed the doors closed and went back to my list.

“It’s all good” I told myself, “You are exhausted, so you know that you MUST have done a LOT. You’ll see”!

Number 3. Tidy up the games cupboard. 

Now THIS one I knew I could tick off. I walked into the hallway to open what once was a linen press that we had turned into a games cupboard. I flung the doors open proudly so I could check out my awesomeness.

But I was startled to see boxes literally stuffed in and several loose games pieces on the floor.
The higher shelves were still immaculate but the lower ones….not so much!The second bottom shelf had some of Lucas’ dinosaurs gathered in a corner having a “pow wow” and for some strange reason…..there was a sheet stuffed in there? It hasn’t been used as a linen closet for years?

But then I remembered:

<<– See this photo?  See that little bitty screw and screwdriver that are stuck up in the architrave with blu-tack? Well, the cupboard usually has a child lock on it to prevent access by the smaller humans but I took it off a few weeks ago so that Ella could get to it easily when she had a friend stay over. I hadn’t told the boys that they could access it now but they have obviously found out!  And silly me forgot to re-attach it!

I sighed resignedly and glanced down at item number four hoping for a reprieve.

4. Re-organise our walk-in robe.

I laughed out loud when I read this, I KNEW it was a disaster – I got dressed this morning by putting on something straight from the ironing basket (un-ironed of course)!

My list sure wasn’t looking good.

I thought a good alternative would be to write down what I HAD done instead of pointing out to myself what I hadn’t.

Let’s see. Monday: Met a friend for coffee, put petrol in my car, made the lunches for the week at school, re-packed Ella’s bags for camp (don’t even GO there!), came home and slept for 3 hours. Dragged myself up to school to collect the kids, had an impromptu meeting with the teacher. Spent waaaay too long arguing with Harley over doing his homework, over showering, over packing up his toys, over just.about.everything! And fell into bed exhausted at 9pm.

No. Can’t write that down. That’s just a normal day. No special achievements there.

Tuesday: Vacuumed and mopped house, washed 4 loads of washing, baked 2 loaves of gluten-free bread and changed sheets on three beds. Not bad….but then I lay down on the lounge and slept for an hour before collecting the kids. Same afternoon routine : argue, be firm, still manage to lose, fall into bed exhausted.

Wednesday: Drove Mr P to the airport for his interstate flight, did the grocery shopping, slept for 2 hours and was woken by a text message from a friend. Met her for a quick coffee before collecting the kids.

After school fights, forcefulness and frustrations.

Rinse and repeat.

And today: 2 more loads of washing, fresh food shopping, cooked two meals and …wait for it…..slept for another hour.

There’s a theme emerging here! I seem to be doing a lot of sleeping. Hmmmm, maybe it’s my body’s way of saying ENOUGH ALREADY!

Or maybe it’s just all too overwhelming and my brain is choosing to shut down! LOL

I seriously take my hat off to mothers who manage to work outside the home as well as keep a house and family. I simply do not know how they do it. They are AMAZING!

I can hardly cope with the everyday stuff let alone my “later list”. And about that later list?

Well, if you’re looking for me – I’ll be curled up on some couch somewhere watching that stupid list BURN on an open fire! I don’t care if it’s summer here! I can handle the heat.

And then?

Well then, I’ll more than likely doze off

(Almost) Wordless Wednesday 15/2/12…my odd child!

I’m only just scraping in to Wordless Wednesday by a few hours here in Australia and I wasn’t going to post anything today but I just HAVE to share this.

I was heading to bed for an early night and went into the boy’s room to check on them first. I kissed them both and as I pulled up Lucas’ sheets, I noticed a big lump protruding from the bottom of the bed so I felt it but couldn’t work out what it was.  I went and turned on the hallway light to get a better look and had to stifle a laugh when I noticed him sporting an OVEN MITT on his FOOT???

Yup. That’s right. An oven mitt!

It was complete with food stains because it had been thrown in the hallway in front of the laundry (by a lazy me) so he’s obviously seen it on his way to his bedroom and thought: ‘Hmmmm……This big sock is pretty cool, I will put it on!’

What a thoroughly odd child!

But it did give me a giggle

Facebook and Thunderstorms.

I remember back when I was only a small child and the one thing that I was majorly petrified of was thunderstorms. And I also remember how I used to climb into my parents bed until it passed and only there and then, did I feel safe.

As a child you just expect your parents to be braver, stronger and wiser than you are. You assume it goes with the territory.

However, I’m sure that there were many times that things frightened or unnerved my parents, but they continued to stay strong for our sake because that’s just what parents do right?

Well….now that I’m a parent myself, I sometimes wish that I could still climb into my parents bed, pull the covers over my head and let them deal with whatever or whoever had upset me.

But I know that I can’t do that anymore. I have to be the provider of a bed to hide in and I have to step up and be the brave, strong and wise one.

And we all know how incredibly tough that can be at times.

I am realising that my children expect from me what I did from my parents and to be frank – that scares the heck outta me!

Because I am far from having it all together.

In fact, just today, I was “unfriended” by someone on Facebook whom I thought I had a good relationship with.  And it kinda hit me from left field and yeah – I’ll admit it: it really upset me! I wanted to go to my Mum in tears like I would have done when I was 12 and require her to say all the right things and make me “feel” better and put an emotional band-aid on me so to speak.

I wanted to find out what on earth I had done wrong and I wanted to stamp my foot and scream like a petulant child.

But I couldn’t.

A remarkable friend of mine wrote to me: “It is all part of the tapestry of life, dearest Fi. Life is too short to give energy to this kind of thing. Try not to let this person be ‘rent-free’ in your head space!”

 What awesome advice!

So here I sit, calling myself a Christian and knowing that I am loved and accepted by God BUT still letting silly little things like this steal my joy. It really is ridiculous when I KNOW in my head that they really don’t matter in the grand scheme of things. It’s moments like these that I get to choose to either learn from them an grow a bit more, or allow it to consume me and ruin my day unnecessarily.

And the similarity between my socially challenged children being bewildered by social reactions – and me being completely blind sighted by this unexpected unfriending was not lost on me at all!

I can only imagine how hurt my boys must feel when someone “unfriends” them in real life when they have no clue as to what they’ve done.

I have a better (though not complete) idea now of how confusing it must be to my boys to think that they’ve said and done everything correctly in a social situation only to be turned away by people that they really believed liked them for who they were. And it’s helped me to understand better why sometimes after school, Harley comes home and throws the metaphorical sheets over his head and hides from the world.

It’s because I am SAFE.

I love him no matter how he acts…..He knows that I will never unfriend him and that he doesn’t have to put on airs and graces with me.

And that right there – is incredibly special to me. I have realised that I AM the parent who can calm my child after thunderstorms and I AM the parent who provides the safety that he needs until the storm has passed.
Life is damn hard at the best of times with a neuro-typically wired brain…..but when every single social situation is as different as the seasons…..How much more challenging is it for those on the spectrum?

I am comforted by the knowledge that God will NEVER unfriend me no matter what I say or do and that is what I intend to teach my children.

Out of the blue.

I really love it when people surprise me.

It can turn a rotten day into a great day. Or a “better” day at the very least.

 My husband is referred to on this blog as “Mr Patient” but I’ve never (until now) explained the full reason for giving him this pseudonym.

It’s kind of a family in-joke. The fact is: He is probably one of the least patient people I know and therein lies the irony. Calling him “Mr Short-Fuse” or “Mr Can’t Cope” doesn’t really have the same comforting notion attached to it. People don’t know where to look or how to act when you describe someone the way it really is. So I opted for the kind approach.

But don’t get me wrong: Mr P is a wonderful man, a loving husband and a great father, but he just doesn’t cope well with the children and their noise levels and consequently: most of the child rearing falls on me.

No, it’s not ideal but I can see that he doesn’t handle them and their “stuff’ because I can also see a lot of AS traits in him that contribute to his lack of coping mechanisms. And both of us have developed big sensory issues that we never remembered having previously.

So I make allowances for this and usually take over the kid stuff to keep the peace.

However, this past week I have been under a lot of pressure from all angles. A lot has been going on and I haven’t managed my stress levels very well I’m afraid. I have been very teary, sleepy (a result of me wanting to shut down) and more than a little brain fried.

But as all mothers do – I’ve soldiered on for the sake of my kids.

Until this morning: I sat at the table eating breakfast trying to block out the cacophony of noises surrounding me.  There was screaming coming from Harley – something had set him off and I didn’t really care to know what.

Lucas was throwing his teddies at the wall and catching them on the rebound and Ella sat with her iPod buds in her ear in an attempt to block out the chaos. Half her luck!

Mr P was in the kitchen unpacking the dishwasher and every clang and clunk made my skin crawl. I felt like I was going to explode with anger.

I took my now empty bowl over to the sink, glared at him and stomped off to our room.  I KNEW I simply had to get a grip. But the tears flowed as I felt myself sinking deeper and deeper into the familiar territory that is depression.

I wondered aloud if I had taken my medication this morning and went back out to the kitchen to count the tablets in the box so that I could find out. As I turned the corner to the kitchen, Mr P took one look at me with my tear-stained face and slumped shoulders and said: “Woah….We need to get out of here”.

“I’m not going anywhere, can’t you see I’m exhausted” I screamed at him spinning on my heel. His shocked face didn’t register at first but it softened as he replied:

“No, ‘we’ meaning the kids and I. I’m going to take them out for a couple of hours and give you a break”

 I looked at him to see if he was messing with me.

“You’d really do that?” I enquired. It was an unusual offer for him to make. He knows that he can’t handle them all together and usually only takes a maximum of 2 at a time.

 “You need it, you need to rest”. He answered. “I will make it work. They’re our kids and I don’t do enough to help you.”

“But the boys need to be pre-warned, you can’t spring it on them like this” I protested.

“So tell them now” he countered.

Ella walked over to me at that moment and put her arm around me and rested her head on my shoulder. She said: “It’s ok Mum, I can help Dad with the boys, don’t cry, it’ll be fine, you’ll see”.

I walked into the boy’s room and sat down on Harley’s bed and told them that Daddy was going to take them all for a drive.

“Your eyes are wet” stated Harley.

“I’m hungry” said Lucas.

And with that – I knew that they would be ok.

Mr Patient then ushered me back to the bedroom , closed our blinds and pulled back the sheets.

Almost two hours later I woke up refreshed and with a restored faith in my husband.

 This is why I KNOW that God is good.

 He will always provide the rest that we need but it doesn’t always happen in the way that we expect it will.

Something’s gotta give.

Thank God it’s Friday.

In this house – it’s not just a cute phrase that we toss around ….we really literally DO thank God when the weekend arrives because school days are a special kind of hell.

This week has been a particularly hard one with 5 MAJOR meltdowns to contend with and they’ve all left me feeling completely depleted.

And it’s not just me that’s being directly affected. This morning, Ella had to step up (as she has done many times in the past) and be the extra parent to ensure that we all made it out the door in time.

She had to prepare Lucas’ breakfast, keep on top of him to make sure he actually eats it, help him get dressed, clean his teeth and put his lunch in his bag.  She then helped him make his bed and then had to go and do all of these things for herself as well.

She is not quite 12. It’s not fair. She shouldn’t have to take on so much responsibility at her age.

But it had to be this way. Harley had a level 10 meltdown this morning. And those ones are the absolute pits. I have bruises on my legs and my head still throbs where I was kicked. He wasn’t in control of his body and was unable to function in any sense.

It was like an out-of-body experience.

Bad.

I was here, but unable to pacify Harley and look after everything else as well so I NEEDED her help and I seriously don’t know what I would’ve done without her.

I was lying beside Harley on his bed while he kicked, screamed, thrashed and cried and was on the phone to my Mum at a ridiculous hour, because I couldn’t bring Harley down again. It was frightening and overwhelming even for me. I asked Mum to pray with me. I had no clue what to do next because he was so distraught and in such a state that I had to stay close so that he didn’t hurt himself. My wounds will heal, but I didn’t want him to self-harm.

Long story short: I think he is struggling with the social aspect of school and will be delving deeper into this as of Monday. The seed was planted this morning with the teacher so I have to gather my facts over the weekend before discussing it further).

 After I’d dropped the kids off at school this morning, some lovely mothers invited me out for a coffee and I jumped at the chance. I NEEDED a wind down and bless them – they were just what I needed.

In the past, there have been times that I have spoken to friends with NT children only to be told “but all kids do that”. But when I explained what we’d been through this morning, they confirmed for me what I’ve wondered about all along.

No. That’s not “normal” behaviour for an 8 old yr old child. Sure, NT kids certainly lose it on occasion, but not with the frequency that we deal with it and they duration is much shorter for NT children.

And then I described what my beautiful daughter had to do this morning and they agreed that it is a lot to expect from her.

So yes…I do feel bad for her…..but what are my options?

I don’t see how I can manage without her and that conflicts with my desire to free her and let her be the kid that she still is. Mr Patient was away again with work, he returns this evening and I have no family here. She was all I had.

So I have been consoling myself with the thoughts that perhaps parenting will come more easily to Ella than it did to me. Because she likely won’t see anything in her kids that’s worse than what she’s grown up with. If anything, she will wonder what’s wrong if she has calm and placid kids!

Me?
Well, I grew up with one sister and neither of us had spectrum related behaviour issues to deal with. I’ve spoken at length with Mum on this too.

That’s why this is all so new to me. I see nothing that reminds me of my own childhood. I have no memories of my Mum sitting in a puddle of tears crying because her heart was breaking for her child who isn’t even close to controlling their emotions. Or feeling her almost tangible anxiety over her child that has no way of communicating other than that kind of behaviour when in distress.

And I’m very aware that my daughter sees far more than a pre-teen ever should.

I just don’t know how to change this.

Dirt Boy.

Remember how I told you all before that my boys – though both diagnosed with Aspergers – have completely different sensory profiles?

Well, yep. We saw that in action BIG time yesterday

I took the children to a local park after school with a friend for afternoon tea. They all had a fabulous time and are already asking when they can go back so we hit on areal winner.

But this story begins after we came home last night and the “fun” that followed

(Just as a reminder….Harley is the germ-phobic, dirt avoiding, noise hating child who washes his hands frequently in a manner that’s borderline OCD. In fact, he won’t even use a public restroom unless he has first checked that there is in fact soap in the dispensers. He did this yesterday too  Whereas Lucas is the complete opposite: he runs, he yells, he plays in water and mud and doesn’t particularly care what state his hands are in. )

So having such different sensory needs sure makes for a fun life let me tell you!

~~~

After we arrived home, I asked the kids to remove their shoes and throw their clothes into the laundry hamper and hop in the shower. I was most surprised when Lucas actually did all this BY HIMSELF but my biggest surprise was still yet to come.

We ate dinner, cleaned their teeth and headed for their bedrooms to start the story book, kiss and cuddle routine when I noticed a trail of dirt leading towards Lucas’ bed. I figured that it must have fallen out of his shoes so I grabbed the broom and swept it up.

I returned the broom to the kitchen when I heard Mr Patient yell out : “Fiiiiiiiiii!, You HAVE to see this!!!!” So I rushed back in there CRINGING because it was one of those ‘Uh-Oh’ cries. And yup…..It was for good reason!

On Lucas’ window sill which is directly over his bed, there was a mound of dirt that was roughly as high as an upturned cereal bowl and in the top were 3 little weeds that Lucas had somehow smuggled home from the park WITHOUT ME KNOWING and he had ‘planted’ them!   And the dirt that hadn’t managed to stay on the sill had spilt ALL down his wall, into his bed and under the covers.

Lucas was beaming and as proud as punch as he showed us that he had ‘planted some flowers to make his room pretty’.

Well, after we thanked God that he hadn’t decided to ‘water his flowers’ and had picked ourselves up off the floor after hysterical laughter, I decided that I was going to buy him a special pot and some real flowers to plant in the morning.

So 6 dustpan loads, a new set of bed linen and a through vacuum later – we put the boys to bed an hour later than usual.

And today I followed through with my promise to help him plant a proper garden and purchased some pots and plants. I went to the nursery and found these wonderful potted flowers from a company called: Ability Options which is a company that provides employment to individuals who are disabled and allows them to live with dignity within the community.

You can read more about their  Wholesale Nursery >>HERE<<.

So next I went and I purchased three small pots with the intention of letting all the children do one each. But Harley took one look at the dirt and went pale saying: “Ah Mum….Is it ok if I don’t do one?”

I giggled. I’d expected that.

So Lucas was in sensory seeker heaven as he helped me dig out the potting mix, and re-pot the blooms.

His ‘big boy’ job now is to water them everyday and keep them alive.

And he’s promised NOT to plant any more flowers anywhere else in the house LOL!

Enjoy these photos. I’m just annoyed with myself for not thinking to grab the camera when it first happened!

Welcome to high-functioning autism. It’s not as rosy as you might think.

Welcome to high functioning autism.

This is the side of it that breaks a parent’s heart.

Yes, having a verbal child is a blessing I admit, but having that same verbal child spend an entire day wearing his neuro-typical mask then come home being completely unable to communicate his fears, needs and emotions to you is extremely frustrating for him and for you.

He becomes non-verbal when he is in complete meltdown. He is unable to do anything but thrash, grunt groan and scream.

Because in our experience, verbal does not automatically mean ‘proficient at conveying emotions’. But in fact , I’ve noticed that it causes society to incorrectly assume that there are no hurdles to overcome so allowances are not made.

~~~~~

It’s been one of those days. The ones that make you want to curl up in the foetal position in bed with the covers over your head until it passes.

Or something like that.

If I were the throwing type, I’d pick something up and hurl it right now just so I could get the satisfaction of hearing something smash.  And maybe when I look at the thousands of tiny pieces I could imagine them to be my anxieties being destroyed?

Who know….? Maybe not.

There just isn’t enough room in my brain to fit all the coping mechanisms that I need. There’s barely any space to look after myself.

I still don’t know what happened to trigger the explosions… I may find out…I may not. But what I do know is that watching my child sit in the back of the car kicking, screaming and crying really hurts.

It hurts both physically and emotionally because I am usually the one in the direct firing line of all of the angst, anger and rage. You’d think I’d be used to it after all this time but no, it still kills me to see my boy in a state that he is unable to find his way out of alone.

We sat in that stupid school car park long after everyone else had left this afternoon because I knew that I couldn’t possibly drive until I’d managed to bring him down again.

And so I admit it…..I walked.

Not far, only a metre or so, but far enough away from the car so that I could no longer hear the cries and screams.

Far enough away that I could try to gain some perspective and muster up some strength.

Far enough away that I could pray out loud in a voice that I could actually hear myself - one that wasn’t drowned out by autism at it’s very finest.

I took the other 2 children to a safe distance, away from the human tornado that was filling up the small space in the tiny car, and we sat in the gutter and we waited.

I had my eyes fixed on the vehicle the entire time so I knew he was safe but I just couldn’t listen to another minute. It was doing my head in.

I hate feeling that darn helpless.

Eventually the screams turned to sobs and the sobs turned into silent tears so I climbed into the backseat of my cramped little hatchback and wrapped my arms around his quivering body and held him close while he trembled and sobbed.

His head was buried in my lap, his hands were clamped firmly over his ears and his eyes were squeezed shut despite the tears that kept falling.

Together we stayed there hugging, enveloped in silence for what seemed like an eternity.

We were so close but so far apart.

Living in the exact same world but experiencing it so incredibly differently.

Both crying but for enormously different reasons.

I looked down at my mess of a child breaking his heart for reasons I may never discover and asked the same question that I have asked many times before:

Why does it have to be this damn hard?

Puddles and Swings….

Alrighty,

Here it is…..I’ve decided that I will indeed start a new blog for all my non-autism stuff.  I really feel the need for somewhere that I can be less serious and more lighthearted and blog about whatever the heck I feel like without letting this blog take a backseat.

So far it only contains 1 post and the “about me” section but eventually  I will get it up and running.

Wonderfully Wired will still be my primary blog but the other one exists solely as a venting place and somewhere to “let a bit of crazy out” so I don’t scare you all away from here  ;)

If you’re curious and wanna take a look…here tis:  Click >>> HERE <<< But remember…..I warned you!

Regrets…I’ve had a few.

Addendum:

I’ve learned that there is a gaping distance between “creating awareness” and putting yourself and your family in the firing line.

There are some decisions that I’ve made in my life that have catapulted me right where I want to go and then there are others that I kinda wish I made differently.

Like the decision to “market” my blog.

I have no intention of becoming a “writer” or a published author. (At this stage).

I am not interested in advertising on my blog to make money , and to explain my reasons for blogging, let me go back to the reasons behind why I started it in the first place.

It all started (believe it or not) in therapy. I was seeing a prayer counsellor to try to make sense of my life and to learn some coping strategies on how to deal with the emotions attached to my newly diagnosed son, my recently deceased Dad and my overwhelmingly out-of-sync life.

She would set me homework every week of writing out my thoughts and struggles in the form of a letter to God and each week, I would bring it in and pray through the points with her.
Well, I soon discovered that writing it all out was really really helping me to process things and get my head around what needed to be dealt with and I felt a massive release once I’d “laid my troubles down” in print.

So this blog was born.

It was originally only something that I told close friends and family about and never intended for it to be quite so public. In fact, in the early days, it was only accessible to those that I chose to give the link to.

During this time, I started reading other Mother’s blogs who were walking a very similar path to mine and many of their words resonated with me. So gradually I removed my privacy settings and started to leave comments on other blogs.

Then before I knew it, I was being accepted into the very warm and inviting autism community with open arms and I felt all warm and fuzzy.

Very soon, my blog roll grew, my stats went up and I soon realised that there were actually people out there who cared about our little lives and it felt good! I so badly wanted understanding for my boys and for their struggles that I jumped into the role of advocate with both feet without considering many of the consequences.

So, I decided to reactivate my Facebook account after a 2 year hiatus because I really honestly believed that this would help spread the need for understanding autism better and help to pave the futures for my boys by increasing awareness.  But what I didn’t think about was the effect that it would have on my blog and particularly on my writing, not to mention my self-esteem.

In fact, I wish I’d never ever published my blog to Facebook.

There. I said it.

Writing is an extremely subjective field. People either love what you write or they hate it and usually there is no middle ground. And because I started to link to my blog on FB, the knowledge that people who I would see in my everyday life could possibly now read it, has caused me to be a lot more censored in my writing.

I stopped writing about the things that mattered to me and started writing watered down versions of what I really wanted to say and overindulged in general and no-confrontational topics. Or I poured out my heart causing those that I know in real life to either avoid me, or change their opinions of me because the mask I wore every day had been removed.

But the thing that is first and foremost in my mind with every.single.post that I write is the words of someone who I once held dear. This friend wrote to me on several occasions to tell me that I was damaging my children by writing about them and that I should’ve had more of a filter with what I wrote about.

And yes…I agree on some levels.

There were times that I probably could’ve perhaps provided less personal details but I learned from them and deleted damaging posts from my archives. But her words stung me because I so desperately wanted to be a great mother and felt like my every move was under scrutiny and open for public judgement.

But I couldn’t very well complain could I?….I’d done this to myself after all.

Because I’ve not written about friendships in particular, most of you wouldn’t know that I’ve had 4 very close friendships completely nosedive and fall apart in dramatic ways over the last 7 years. But it’s time for me to delve a little deeper into this to explain where I’m coming from.

None of these friendships were in any way related to each other, none of them occurred at the same time and it hasn’t escaped my attention that I was the only common denominator in all of these friendships.

Says a lot doesn’t it?

Well…yes, and no.

I’ve since realised that all of them HAD to come to an end because they were all toxic on some level and not what I needed in my life. With most of them, I was being controlled, manipulated and completely walked over. I rarely stood up for myself and took a lot on board that I didn’t really need to. I listened to every word that they said and constantly felt guilty about who I was, what I thought and what I believed. It changed me into a guarded, sometimes suspicious and fearful friend and it really really hurt.

It has greatly affected my writing and combined with the fact that people who were once oblivious to my blog now know about (and sometimes read it), I have often wondered why I didn’t just leave well enough alone.

And with that in mind, I’ve made the decision to stop publishing this blog on Facebook and to go back to the safe confines of the autism community. I’m going back to what I know and understand, and as far as possible from the scrutiny that I have brought upon myself by putting us all out there.

It’s going back to the early days of my blog being read only by those who care about us and want to stay in the loop and to those that have subscribed because they are interested in reading about us and our corner of the world. To those that put “aspergers”, “autism” and “SPD” into search engines and those that can offer support, advice or a cyber hug.

I know this will greatly affect my stats but I no longer care. I’d rather be read by 5 people who want to read as opposed to 300 who are just being nosey.

My real life friends are extremely cherished by me and they know who they are, and I hope that they will continue to support us whether they are directly affected by autism or not.

This blog will still update on my Wonderfully Wired Facebook Page, but not to my personal Facebook profile.  I will also continue to tweet and update on Twitter because most of my followers are autism related, and I’m considering starting a new blog for all my “non-autism” posts.

I’ll keep you posted on that when I decide

But for all of my regular, loyal readers, nothing is going to change for you, my blog isn’t going private it just won’t be advertised to anyone that doesn’t have an active interest in it.

So in saying that, I hope to see you all back here soon but if not….I understand.

Love to you all

Fi xx