I am Mrs 79. Pleased to meet you.

I’ve been thinking a lot lately about the environmental factor in autism. Sure , we know it is only one possible theory as we already know that it’s also made up of a genetic component. And yes, I know there are certain people out there with theories that vaccinations have triggered off those children that were already genetically pre-disposed but that is an argument that I am NOT going into as this is not the direction that I want to take this post in.

So, I know that environment is only one small part but I definitely feel that it can be a big part nonetheless. Tony Attwood has said that to reach a diagnosis of aspergers, it is like ‘completing a 100-piece jigsaw puzzle. You need 80 or more pieces to complete the picture’.

 So, my boys are obviously made up of 80 or more pieces (and I believe the husband is too) . He often jokes to me that I am only one piece short of receiving a diagnosis myself.

In fact he regularly affectionately calls me ’Mrs 79′. He is referring to the obsessions that I have developed over the almost 14 years that we have been married. When we first got hitched, he took a photo of our master bedroom to show the difference between his side and mine.

His was spick and span, neat and tidy and anally perfectly organised. And then my side……clothes thrown everywhere, books piled high and balanced precariously on the bedside table, an abundance of moisturising creams and make up in the drawer that was regularly left open and shoes strewn carelessly over the floor.

You get the picture.

I deliberately misplaced couldn’t find that particular photo anywhere to put it on this post so you’ll have to take my word for it!
I was young, messy, lazy, nonplussed and regularly made fun of Mr Patient for his pedantic and obsessive ways.

I clearly remember (not knowing about ASDs back then) that he often had what I can now see were actuallymeltdowns if things didn’t go exactly as he’d imagined they would or if plans changed without his prior knowledge. For example: Before meeting me, every 1st Saturday of each month was spent on the ‘inside’ of the house cleaning, and every other Saturday was when he would do the ‘outside’ (mow the lawns etc). So you can imagine his freak-out the first time that I invited friends over for lunch on ‘Outside Saturday’  week. Or made a picnic and suggested we drive to the beach on ‘Inside Saturday’….. He struggled to say the least!

But then as the years passed, I became more and more obsessive myself. I became the mother that had all of my children’s clothes hanging on the same coloured hanger as the shirt: White shirts on white hangers, blue shirts on blue, orange shirts on orange hangers and they were all grouped together in the colours that blended.

The blue shirts were next to the green which were next to the yellow which merged seamlessly into orange etc. No-one else was allowed to touch the clothes…….including Mr Patient and I would flip out if anyone so much as looked at the wardrobes.

And when I hung clothes on the clothes line – blue clothes HAD TO be hung with TWO blue pegs. I simply wouldn’t cope if you used a red and a blue peg. *Gasp*

I had also started to turn into a neat freak wanting everything perfectly in its place and working myself to the bone to make it happen. I would screech at the children if they had more than one toy out and I was unable to leave the house in the mornings until ALL of the beds were made and the dishes were done on the off-chance that SOMEONE would come and visit. (No-one ever did). I really started to be bothered by all of this and questioned myself as I knew that this wasn’t the real me.

So I took myself off to see a psychologist fearing that I was losing it big time!

I had a lot going on; My Dad had just passed away, Harley was only recently diagnosed, I had suffered a particularly nasty case of glandular fever (mono) that almost turned into CFS and my body was in shut-down due to the 4 major surgeries it had endured in just 2 years.

My immune system wasn’t coping and my stress levels were at an all time high. The psychologist helped me to see that everything else in my life was literally spiralling out of control and I so desperately wanted to gain back some control. And the washing was one thing that I actually COULD do something about.

She gently explained that what I was doing was a form of ‘normalizing’ my life. By controlling these mundane every day things so closely I was able to take back some ground that I thought I had lost through circumstances beyond my control. Nowadays – I still LIKE my clothes to be on the right hangers but if they aren’t, I don’t lose it, I’m able to just shrug my shoulders and move on!

I have realised that it’s not the end of the world if a blue shirt goes on a red hanger and my house RARELY looks like a show home anymore. (I have three children for goodness sake!)

And yes, there is actually a point to this – stay with me, I’ll reach it eventually…..

So, back to the environmental factor in autism.

I was never a particularly obsessive person, in fact the bedroom photo story proves that point perfectly, but when stress and circumstances were combined……I did develop some very obsessive tendencies that are often associated with spectrum disorders.

So it is interesting to me now to look back and realise that environmental factors DO in fact play a large part in autism.  And the term ‘environmental factors’ does not just apply to untested chemicals, pesticides, flame retardants, detergents etc.. but things like the circumstances of our life, or the environment in which we live and also our everyday surroundings .

I wonder that if I was married to someone who was as sloppy as me and also didn’t care for routine, if things would have been different? I may not have dived into these obsessive natures that I often witnessed in my husband as HIS coping strategies and I wouldn’t be comparing my non-coping signs to those of individuals on the autistic spectrum?

I guess I’ll never know.

But my mum tells me that as a child growing up, I didn’t struggle in social situations, I made friends very easily and  I was NEVER obsessive or needed routine or structure.  I thrived with change and I know for myself that I have never felt particularly  ’different”’or had any trouble understanding body language or facial expressions.

Yet……now that I am the only NT in (what may as well be called) a house full of aspies – I have somehow been ‘moulded’  into an honorary aspie if you will. I think it’s just a case of sink or swim.

I have needed to adapt to my surroundings and I have had to choose to see things through a different lens.

I may have gradually gone from perhaps 20 pieces, to 30, then to 40 and now I may possibly be up in the 70s so I truly believe that the environmental factor HAS played quite a major part here.

It surely makes sense. I live it and breathe it. It’s all I am surrounded with. It’s something that I can never and would never WANT TO escape.

It’s all A-OK with me because 79 is a FABULOUS number after all.

Have a great weekend all.

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.

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

~~~~~~~