Judging books by their covers…

 Most of us know the phrase: ‘Don’t judge a book by its cover’ which basically means that there is a lot more to EVERYTHING than what you see on the surface.

And it’s certainly very true that its easy to jump to conclusions when we look at other people in our lives. Too often we form opinions based solely on appearance. And I too  have been guilty of this a number of times myself, but mostly – I come from a place where I believe that every single person has a story and that no one’s story is any less important than anyone else’s. But sadly – in today’s society, it is a view that isn’t held by many.

Because, like so many other hidden quirks, nuances and physical attributes, you can’t always tell if someone has a disability just by looking at them, especially when it is a disability such as high functioning autism.

I have lost count of the number of times that people have shown surprise upon finding out that my boys are on the autism spectrum. And I never quite know how to react to their surprise. Does their surprise indicate that to them – my child doesn’t look sick enough to be diagnosed with anything? Did they expect my boys to look more, I don’t know, handicapped? Or do they simply think that I have just jumped on the latest fad bandwagon whereby getting your child a trendy diagnosis is akin to acquiring the latest apple accessory?

Do people have an idea in their heads of what autism should look like? And do my boys fail to meet their expectations accurately? Were they expecting them to look more disabled? Would a wheelchair help to sell it?

I really don’t know the answer to any of that. But I have to say that every time that I find myself in a situation like this, I am torn.  A part of me feels that I somehow, on some warped level, need to defend their diagnoses and PROVE that they really do meet the diagnostic criteria despite the fact that they “look” completely “normal” at that given moment. I feel like I am under the spotlight as a mother and I want to blurt out all the challenging behaviours in an attempt to provide evidence that my child isn’t always this charming, well-behaved and loveable.  Because isn’t that what some people associate autism with? Misbehaving, out-of-control children who have no future? Why do I feel the need to feed that incorrect assumption? Why don’t I focus on the “good” parts of autism?  Because I want to be believed. That’s why.

I read that back to myself just now and I am disgusted.  Not because I feel bad for painting a true picture of how our lives sometimes are, but because I feel like I need to justify the good and very normal behaviour that my kids are displaying in order to prove that they truly do have a diagnosis of autism spectrum disorder.

Because any parent of a high functioning child on the spectrum will attest that the child you often see in public is often the complete opposite to what they live with. They also know how hard it is when your child appears “normal”. Because they want to celebrate their child’s success in “fitting in” but know that there will be a huge price to pay for it later. And it’s a price that no one else will have to experience.

But here’s where I need to provide one very big and important disclaimer: When we tell you the bad stuff, the challenging stuff and the stuff that puts an awkward feeling in the air – we are not trying to extract sympathy for ourselves or even for our children.

What we are saying is that society needs to sit up and pay attention because these regular looking but struggling children will one day grow into adults. And currently, there are adults in the autism community who are overlooked and ignored because society has this ill-conceived misconception that high-functioning autism is no big deal.  That because these people look like everybody else that they are just attention grabbing complainers using a diagnosis to explain away their weirdness or lack of social awareness.

Lately – I admit that I have lost the will to keep advocating for autism. Because it’s exhausting and I don’t have the time to explain it in depth to people who really aren’t that interested in learning about it anyway.

Although the passionate side of me really wants to spread awareness far and wide, the sensible part of me says that there is already enough awareness out there. But what there isn’t enough of is; compassion, understanding and a willingness to learn how to stop judging books by their covers.

Autism is no longer a word that is barely heard of. Almost everyone in the western world have heard the word. But how many of those people have actually taken the time to find out what autism actually is? Or how autism presents, or even how incredibly huge the spectrum is?

The book covers of autistic people may be bright, fancy and attractive to look at , or they may be plain, simplistic and understated. But until people take the time to read these books, understand these books and really read between the lines of what their messages are: They will never be appreciated for how wonderful and valuable they really are.

Once you take the time to read them, you will discover that each one is unique, fascinating, sometimes horrifying and tear inducing but also exciting, thrilling and suspenseful.

And aren’t they the ingredients of all the best sellers out there?

Never judge a book by its cover.

Never, never ever.

The Lorax got it right.

image via alittledelightful.com

Today I went to a Sue Larkey seminar and she was fantastic. As usual.

But I’m not going to write specifically about what she taught us today but instead I’m going to write about what I personally took away from the seminar.

Let me flash back to when I heard Sue Larkey talk for the very first time quite a few years ago now. It was 2008 and Harley was only 5 years old and had only very recently been diagnosed with autism. I was attending my very first Tony Attwood autism seminar and Sue was a guest speaker there.

I remember sitting in that crowded auditorium with literally hundreds of other parents, teachers and carers listening what seemed like hours and hours of information, strategies, advice and ideas and I was overwhelmed and distraught to find out that there was so much that I didn’t know and needed to learn to help my boy.

I came home that night and sat in my bed and cried and cried and cried for literally hours. It was almost like I was reliving the emotional distress that I felt when I first learned that he had autism. I was emotionally and mentally overloaded and felt an enormous sense of helplessness washing over me in tidal waves.

I asked myself: How could I possibly ever learn all THAT?

At that first seminar I took very few notes and absorbed only what my brain could handle but there was a handout (thankfully) that I was able to dive into and explore much later on when I had the brain space to do so.

Gradually, I started to seek out information in my own time and strived to learn as much as I could. I wanted so badly to understand the workings of my son’s wonderfully wired brain. So I started observing him at play, with strangers, with friends and in his classroom environment whenever I went in to help and I found that there was an absolutely brilliant child hiding behind his struggles.

In him I recognised my own stubbornness and refusal to be told that I cannot do something and it spurred me on even further. I threw myself into discovering ways to help him to be the best that he could possibly be. I stared down the challenge and determined that he was going to be successful NO MATTER WHAT!

And slowly – things started to become clearer and clearer.

Then I met my friend LISA who is an adult on the spectrum and my eyes were opened to a whole new level of understanding and possibilities. Seeing autism through the eyes of someone on the spectrum is Uh-mazing!

Even today in the seminar Sue played us a few videos and every single one of them was an interview with an individual with autism. Sue recognises that we can learn SO MUCH from those who LIVE with autism personally and can explain it first hand to those of us who are really only textbook trained. She featured Temple Grandin and Carly Fleischmann. (See video below).

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Honestly…..both of these women are remarkable and well worth the time spent watching some of their videos.

Like my wonderful friend Lisa – these amazing ladies have really opened my eyes and increased my understanding of autism and sensory needs in my boys.

But do you know what I took away from today that surprised me more than anything? What amazed me and gave me the boost that I have been needing oh-so desperately lately? And what reassured me that my boys are in fact going to be ok?

 Confirmation.

She confirmed for me that my gut instincts are spot-on when it comes to my boys. A lot of the stuff that she shared about was stuff that I am already doing with them. Much of which she suggested, spoke about and taught were things that I am already instinctively applying to our family situation.  And these are things that I have learned myself through trial and error and from applying ideas that I have either researched or learnt myself on my own time.

No-one taught me a lot of this stuff – I have learned most of it just by simply following my own maternal gut instincts.

And remember that 4 years ago I was scared out of my head that I was going to somehow fail my child and that he was doomed to a life of mediocrity because *I* couldn’t be the mother that he needed.

~

I remember being told by parents with older children on the spectrum that ‘it gets better’ and I scoffed and rolled my eyes at them. I couldn’t see past the next ten minutes and all I could see was hourly meltdowns, tantrums, hurdles and struggles. I had difficulty believing that it wasn’t always going to be as hard as it was at that moment. But that does really honestly change.

You still experience different levels and intensities of emotions with your child but the battles change and your coping mechanisms increase.

So I want to encourage anyone who is new on this journey and let you know that it DOES get better. It will probably never be easy all of the time but even regular parenting rarely is.

Now let me explain something important here: I am not university educated, I do NOT claim to know everything there is to know about autism and I still learnt a LOT of things today that I didn’t know before. There is always more and more to learn. I am certainly not a scholar and in fact I failed grade 12 because I hated school and never really applied myself so you don’t need to be blessed with super duper intelligence to be a successful parent to these amazing kiddos.

I believe that the most important thing you can give your child is love. If you can love them and accept them just the way they are, you will find that things naturally and gradually fall into place.

It IS overwhelming at first. It IS scary and it IS terrifying when you realise just how complex ASDs are and what they bring with them but you don’t need to know EVERYTHING to effectively parent your child.

You only need to love and focus on your own child and work on helping them. If you love them you will naturally want the best for them anyway and find that information is unconsciously absorbed through applying new methods and strategies.

When I look back to 4 years ago and realise just how far I’ve come without even really trying – I see that there IS a light at the end of the tunnel.

I will NEVER know all there is to know about ASDs because there is so much to learn. But I am in tune with my boys and their needs.

And I know that all of you love your kids too so I’ll finish with one of my all time favourite quotes from Dr Seuss’s The Lorax:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Who are you going to listen to?

When people ask me “What exactly is autism” I usually answer with this: “A complex neurological wiring that presents differently in every single individual on the autistic spectrum”.

Because that’s just it – there is no one autism. It differs greatly from person to person and whilst they share similarities, each individual is unique and has their own strengths and weaknesses. And too often, people compare what they know autism looks like on someone’s daughter, son, cousin, nephew, niece or friend that they know personally and assume that unless their child is exactly like that – there is no chance that there could possibly be a spectrum disorder lurking in their own child.

But there are hundreds of undiagnosed kids out there. I see them everywhere I go, I have acquaintances with kids who desperately need evaluating but I can’t say anything because its not my place because I am “just a parent”.

Not as in only a parent, but as in not qualified to diagnose autism.

And thats ok because that’s true. But I know autism from a different angle than a diagnostician does, and a different angle to how a teacher might see it and I experience different elements of autism to what a textbook teaches them. I’m not a professional on any level but I know how autism looks in my own family. And that’s definitely worth something.

I know that how my boys appear in public and what we live with are two completely opposite things but that even in those moments where the untrained eye wouldn’t necessarily see autism – I still can.

I can look at my boys across a playground and see subtle things like that tiny moment of hesitation when they are spoken to by another child, the way that they move their bodies in either sensory seeking or sensory avoiding ways and the facial expressions that convey their struggles to me. And this is not just because I am their mother, but because I have learned what to look for so therefore I can no longer not see the autism.

And I can also see it in my friend’s children who are already diagnosed on the spectrum. I see those little quirks, hear those speech anomalies and observe the giveaway telltale signs that would be easy to miss if you didn’t know what you were looking for, but those kids also hide it very well in most situations. And often not even deliberately.

Even though its the doctors and health professionals who play a huge part in diagnosing our kids, they also need information and data from parents to complete their diagnosis, so what we observe about our children and report to them is an important part of the bigger picture. We do not have the final say but what we bring to the table DOES matter. We need to work together to achieve success in getting our kids what they need and deserve.

I know a reasonable amount about autism from living with it every day and from being given remarkable first hand insights into the wonderful workings of the autistic mind so it makes sense that I also notice indicators in other children almost everywhere that I go.

I see children who sit with their legs in the “w” position while playing and children who walk on their tip toes frequently. I read about parents who have children who have been terrible sleepers for years despite their best efforts to make it work and my heart breaks for those families because I feel their pain all too well.

“W” sitting
image via http://www.alignedandwell.com

Tip-toe walking
image via http://www.examiner.com

I hear about kids with high anxiety and debilitating panic attacks, and about the children who freak out if their routine is altered. And stories about kids who can’t stand to have different foods touching on their plates or refusal to wear a certain fabric and wonder if there is something more going on.

I notice photos of children who refuse to look at a camera, I see their awkward smiles where their eyes are glazed over and absent and I observe behaviours in public places from a whole new perspective since learning about the sensory issues that children on the spectrum have.

I am often told stories about the cute things other people’s kids do like lining up their toys or arranging their belongings alphabetically, in colour order or in patterns and big loud clangy alarm bells go off in my head. If someone tells me about the odd things that their child collects or shows me photos of the child immersed in a special interest of theirs and appearing unaware of their surroundings or other people because they are so engrossed, I have trouble not shouting: ‘ding, ding, ding’ in their face!

Lining up toys
image via http://www.mariasspace.com

And while its true that none of these above mentioned quirks alone mean that the child necessarily has autism , they are all indicators of autism that are often explained away as other things and might one day need to be explored further. And it saddens me when a parent is told by another well meaning friend (or worse; someone who works in childcare or some branch of medicine) only what they want to hear instead of encouraging them to follow their gut instincts.

Sometimes, when a parent tells me about unusual things that they have noticed about their child whom I already suspect could be spectrummy, I have had to learn to listen, smile and subtly suggest that if they are concerned that they should seek out a professional opinion. Because at the end of the day, my opinion is just that; my opinion. I would hate for my word to be taken as gospel when a child’s future is at stake. But so many parents DO take reassurances from friends, co-workers and sometimes even Doctors who don’t explore concerns properly.

I have had a few friends tell me things about their child that concern them only to have them finish their sentence with: ‘but it’s not autism, because my child is not like yours’ or “I know someone who works in ‘such and such a place’ and they told me that he/she is normal”.

UGH! If you’re worried about hour child’s development in ANY area, get your child assessed properly. And if you’re not being taken seriously but still have strong concerns: fight for your child!

Stand up and push until you get the answers that you need! Be the advocate your child needs.

In cases like this, I usually ask my friend if they think its would be better to ask the question and have it explored and dispelled rather than take someone’s word for it just because they don’t want to cause waves and end up with a child who needs so much more help than they would have if it were picked up earlier.

I then follow with my brain tumour story to illustrate my point.

I had a numb face, an awkward gait, was extremely clumsy and losing my hearing and the biggest indicator was something that I couldn’t describe in any other way than the non-specific “something just doesn’t feel right”.

I was seen by 7 different Doctors who gave me answers like: sleep deprivation, post natal depression (Harley was only 2 weeks old), facial palsy from pushing during childbirth and the good old ‘stress’ diagnosis but it wasn’t until I followed my “gut” instinct and demanded further testing that the 5cm tumour was found growing dangerously close to my brain stem. So if I hadn’t have followed my gut instinct and listened to well meaning friends and some Doctors who were willing to write my concerns off without further exploration, who knows how this story would have ended?

I get that this is a touchy subject, I understand that this may be confronting to read for some people and I’m sorry if I’ve hurt anyone. This is truly not my heart at all.

And no, I’m not writing about anyone I know personally here, I just know how much difference early intervention makes in a child’s life and I’m passionate about children receiving whatever help they can so that they can live their best life. Yes – we’ve had many ups and downs here since my boys were diagnosed but I KNOW that now I am doing everything in my power to give my kids the best start in life.

I used to wonder if things would be better if we’d never found out and sometimes wished that I’d kept my head in the sand for longer because its often all too confrontational and downright hard, but now I know beyond a shadow of a doubt that asking the questions and requesting evaluations was the best move I ever made for my boys.

Because like most parents, I really do just want the very best for my kids.

They deserve that.

A mother just knows. Simple as that.

Personally, I’m tired of reading impersonal and statistical data regarding anything autismy. (See that – I made up my own word!)

I’m far more interested in reading about real life stories told by real life families. I want to be able to read a story and relate and not just fill my head with facts that I’ll likely forget later on. So that’s why I’m going to share Harley’s diagnosis story right here. I have touched on parts of it in some of my very early blog posts but for all those new readers: I want to share “our” story and how I feel personally about early interventions services and how they have or have not affected our family as a whole.

There are a lot of reports around lately regarding early intervention (E.I.) and the validity of it. Which causes confused parents of newly diagnosed children to ask questions such as: Does early intervention really make that much of a difference?

Will my child suffer if they don’t receive any?

And is it true that those who do receive it have a much better chance at success in life?

Well, my short answer is that there is no one treatment, therapy or intervention that is the best one for your child. Because different children need different things and we all know that what works for one child may not work for another. But I will boldly say that from our experience: Yes.  It does work. I would highly recommend staring some sort of intervention as early as you can and then add or subtract interventions as you see them become necessary or ineffectual. And the key word here is to start early. 

I was reading this recently:

Is Early Intervention Really Effective?

After nearly 50 years of research, there is evidence-both data-based and reports from parents and teachers that early intervention increases the developmental and educational gains for the child, improves the functioning of the family, and reaps long-term benefits for society.

Early intervention has been shown to result in the child needing fewer special education and other services later in life and in some cases being indistinguishable from non-handicapped classmates years after intervention.

(You can read more from this site > HERE < ).

And what really struck a chord with me was this line: ‘improves the functioning of the family’. Because it wasn’t just Harley that was suffering. It was every last one of us who were at the brink of exhaustion each and every day. We all felt incredibly helpless, overwhelmed and alone.

We know first hand that E.I. works because the difference between our two boy’s diagnosis stories is as different as night is from day. Lucas has always had the upper hand being the younger and second diagnosed child. Because we already knew the telltale autism signs to watch out for, our house was already running in an ASD friendly way and there were visuals for everything from bathing and cleaning teeth through to step-by-step pictures of getting dressed in the morning stuck up all over the wall. And we had already learned through trial and error how to avoid a lot of possible meltdown triggers. So he wasn’t confronted with clueless and confused parents in the same way that Harley was.

But Harley, my poor sweet Harley hasn’t had it nearly as smoothly as that. I can remember diagnosis day really clearly like it was yesterday. It was a week before Christmas 2008 when we were first told that we were looking at autism. He was 4 and he was in his last year of pre-school. Already too old to access any early interventions at all. Not that we even knew what that was back then.And prior to staring pre-school he went to an in-home day care setting with 4 other children for 2 days per week.

I would often talk to his carer and to his teachers in pre-school asking them if they thought there was anything that I should be concerned about and I was always told “ No, he’s fine. He’s just a typical rowdy boy.”

And all the while we were at home literally tearing our hair out in frustration because our child could barely talk, couldn’t focus on anything for more than a second or two and screamed and tantrummed for hours on end every.freaking.day.  So naturally, it continued to bug me that none of the early childhood teachers had ever noticed anything ‘different’ about the way that he behaved or interacted. It also irritated me that friends would continue to down play any of my concerns. It felt like everyone had labelled me crazy and I began to seriously doubt myself and my parenting skills. But now I can see that none of them were trying to hurt me – they either honestly didn’t see it or didn’t want to get involved so they said what they would want to hear themselves if they were in my shoes.

None of them noticed that he lined up toy cars in colour order. None of them could see the obsessions over routines and none of them seemed bothered by his lack of social skills. He was “just a typical boy” I kept being told every time I voiced a concern. In fact, I was made to feel like I was being incredibly neurotic. I was reassured time and time again that there was nothing to worry about and that if I chilled out a bit more that things would eventually calm down.

But I just couldn’t. Something didn’t sit right within me and I had begun to start my own research because I desperately wanted answers.

Then one day, I walked Harley up to the day-care lady’s door and he pitched a massive fit. He screamed, he kicked he flailed and he was off the scale.  The carer turned to me and said: “What’s wrong with him? I’ve NEVER seen him like this”.

And I was floored. I looked at her in utter disbelief and replied: “You can’t be serious. What do you mean you’ve never seen this? This is all we EVER seem to see. This is the Harley that we live with, this is why YOU are looking after him at the moment and not me”.

And I stormed off.

I can remember driving back home that morning, sitting in the car crying my eyes out and literally yelling at God demanding some sort of answers, and I got them. Oh crikey I got them!

Immediately, I was given perfect clarity and it all started to dawn on me: THIS was high-functioning autism.(HFA). I’d read about this. My Mum had mentioned it to me in passing several times (and I was beginning to understand why she had). So I set about researching HF autism and Aspergers Syndrome. And one of the very few things that I’d remembered reading was that children who are high functioning usually keep it together in places that they don’t feel comfortable but the wheels fall off big time once they arrive home again. And I KNEW that this was exactly what we were seeing with our Harley.

Over the following few weeks I rang many numbers from speech pathologists through to physiotherapists and was always told the exact same thing. “Well….he is too old for our early intervention program but if you think it would be of benefit, you might want to find your own speechie and OT”. And every time I would slam the phone down in disgust and have a big old tantrum of my own.

But conversely, Lucas was diagnosed at only 3 and spent 18 months in a wonderful E.I. program containing a speech pathologist, 2 early childhood teachers, a physiotherapist, an occupational therapist and a psychologist. And wow-oh-wow - the difference in everything from social skills through to speech and impulse control is so bleeding obvious between the boys. I can’t help but be a little sad for Harley.  And of course I have no concrete proof, but I can’t help but think that if I had have followed my mother’s instincts and demanded that Harley be seen earlier despite being told that I was paranoid over nothing, then maybe Harley wouldn’t have missed out on so many vital services.

But I’m not going to live in regret. I am thrilled with the progress that he has made over the last 5 years. I am happy that I understand my child more and more with every passing day and I know that he is an amazing kid with an amazing future. I figured out that there’s no point in torturing myself with woulda shoulda couldas.

But let me finish by saying this: If you have any concerns about your child’s development and maybe everyone around you is telling you what they think you want to hear but you still have doubts: Smile at them and thank them,  but follow your heart because a mother is rarely wrong about her children.

O.C.D…OMG!

Spinning on the spot to regulate himself.

I’ve noticed that there are definite stages that you go through as a parent when your precious child is first diagnosed with autism.

Most parents feel one of two very distinct emotions: either completely blind-sighted and shocked, or relieved that you finally have some answers. And with both of those emotions comes a certain amount of grief. Immediately you start to worry about your child’s health, about your parenting skills, your other children, your family and most of all, how it will impact on the rest of your child’s life. You worry about their future like nobody’s business.

You want to know that it’s going to be ok and you clutch at straws for a while until you eventually find your feet and one day you realise that you’re easing gradually into a new emotional state. And that state is acceptance.

So you start to seek more information. You want to help your child in any way that you can, and your heart for your child is absolutely bursting with compassion. You put yourself in their shoes and you start to become an expert at predicting possible meltdown triggers.  And if you’re like me: you jump on the advocacy band-wagon with both feet.

You declare that you are going to be a world changer and make society a better place for your kids to grow up in. And damn it…..you don’t quit trying despite the setbacks that you continually face.  You pick yourself up time and time again because that’s just what we do.

And then sometimes, in some families, inexplicably and completely out of the blue: you face major regression and it breaks your heart in two.  Before you know it, you are transported right back to the original emotional overload that you experienced when you were first given that scary diagnosis of autism.

******

Here is our story:

AS far as autism goes – things are plodding along nicely. But it’s the stupid co-morbids that are killing us at the moment.  Common co-morbids with autism are Anxiety, ADD, ADHD, ODD and in Harley’s case: OCD (Obsessive Compulsive Disorder). Harley’s social skills, coping mechanisms and general well-being have taken a very steep nose-dive for the worse lately. His anxiety is through the roof, he is having trouble making or keeping friends at school, his sleeping issues have become uncontrollable and he has regressed into his OCD so far that it’s really starting to frighten me.

At night, he starts to become restless right after dinner. He starts flapping his hands ever so subtly, then he begins to lick his hands and fingers and just generally stars to panic. Over nothing.

Soon the pacing starts.

And then the retracing of his steps.

Three times to be exact.

Counting and re-tracing his steps before he crosses the road.

He simply MUST walk along the same cracks in the tiles. If he doesn’t: he says that the voices tell him that someone will die. And he doesn’t want that responsibility on his head so he does it.

Over and over again.

It’s just crazy.

If he gets up to us at night (which he inevitably does every night), he will go back over his steps from his room down the hallway to ours.

Three times.

So he’ll appear in our doorway then turn around and trace his steps again twice more and then appear in our doorway again.

 (Rinse and repeat for the trek back to bed).

It’s getting ridiculous.

He doesn’t even realise that he is licking his hands. Or that he is damaging them more.

And just today I got the fright of my life when we were crossing a busy road and Harley let go of my hand to run back IN THE MIDDLE OF TRAFFIC to retrace his steps.

He was oblivious to anything but the pressing urgency that was gripping him. I had Lucas holding my other hand and I couldn’t let go of him to go chase Harley and in that moment I knew that I couldn’t save both of my boys and in complete panic: I froze. I literally stood still in the middle of the road and screamed with all that I had in me.

And thankfully, THANKFULLY the on-coming car came to a halt. I sat down in the gutter (kerb) and cried while Lucas happily danced around in circles and Harley started licking his hands (as he does when he is anxious). I cannot believe that this is what my life has amounted to. I am furious that this stupid disorder has robbed my family of such peace.

My boy’s hands are ruined. Look at them!

Red raw, painful and bleeding. A daily occurrence lately.

And yes he uses a special soap free wash. I rub a special cream into them each night and bandage his hands but nothing will work when his hands are washed up to 60 or 70 times a day.

I’ve had to admit that this has gotten waaaaay over our heads. He needs professional help and I have started the ball rolling today by phoning his paediatrician, but the earliest appointment that I can get is almost 3 months away and that just won’t do. At the moment, we would appreciate all prayers and well wishes that we can get and I’m spending my evening tonight googling local psychologists and I will find whatever money I need to find to facilitate this happening sooner.

I’m back in the early diagnosis frame of mind which is really hard but I won’t stop fighting for my boy.

Ever.

Mark my words.

I remember…..

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

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

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

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

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

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

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

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

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

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

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

I didn’t believe him.

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

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

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

And it got me all excited!

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

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

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

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

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

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

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.

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.

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

~~~~~~~

A visit to the Doc

Today was a particularly hard day with Harley. For the better part of the morning he was an emotional wreck. He was an explosion waiting to happen and I wasn’t about to be the one to light the fuse so I walked on egg shells for all of our sakes.

The only method that worked here at home with the boys was the ole divide and conquer. I sent each of them to their own rooms to play separately.

I really HAD to do this otherwise there would be no point in keeping Harley home for a circuit breaker day. I simply couldn’t afford to ruin it by allowing them to bicker and argue all day, it was the best option of all.

This afternoon though, I did have to take Lucas to the paediatrician for a basic follow-up appointment after his formal aspergers diagnosis back in March, so Harley had to join us for that. I went prepared with the boy’s DS’s the iPad and some pens and paper. They both behaved brilliantly in the waiting room and I was SO proud of my boys.

Not long after we arrived another mother walked in with two little boys of her own and sat down beside us to wait. She smiled at me but she looked absolutely exhausted. Her eyes were almost hanging out of her head and she looked like she had the weight of the entire world on her shoulders.

I recognised that pain. All too well.

Her youngest son (who was 4) asked her in fragmented speech if she would help him to do the puzzle that he was holding and she sighed in resignation and lowered herself to the floor to join her son.

But he jumped up and waved his arms about frantically shouting “No Mama, I seat on your knee I will, no you on the floor”.

She looked up at me and rolled her eyes saying “The things we do hey!” as she climbed back up onto the chair drawing her little boy onto her lap.

I nodded in agreement and smiled back at her.

The little boy (his name was Steven) glanced at me shyly, frowned and then buried his head into his Mum’s shoulder whimpering. “That scary lady look-ded at me”

The mother smiled at me apologetically and offered me an explanation to her son’s behaviour : “I’m so sorry about that – my son is still learning how to be around other people” she sighed sadly and took a deep breath….“He has autism”

“I know he does” I answered. “It’s ok….really”.

“You do…..I mean….How did you….what did…I mean, I KNEW you looked familiar, but….can you remind me how I know you though, I’m so sorry but my memory is letting me down lately”…..she trailed off sadly.

“No, we’ve never met” I giggled gently, “Well to my knowledge anyway, it’s just that…..I recognised the signs” I ventured hesitantly.

“Wow…..How?” she asked amazed.

At that point I gestured to Lucas and Harley who were sitting in the corner with their heads down focussing intently on their Ds games. Harley was also rocking back on forth on the spot and Lucas was humming to himself.

 “What do you see” I asked her….

She studied them for a bit and then she almost shouted:

“Oh my goodness! ….  Are your boys….. I mean, have they….Um, do they also have autism?” She asked shyly.

 “Yep, sure do” I answered. “Both of ‘em”.

 “Wow…..I would have never have picked that” she said and then stopped herself abruptly……“Oh my God, I just did that EXACT same thing that I HATE other people doing to me”

I laughed.

“I HATE it when people tell me that my son doesn’t LOOK autistic and now I’ve gone and done it myself!   It’s SUCH an insult when they say it to me….like I’m lying or something!”

I laughed again and assured her that it wasn’t a huge deal. And then a few minutes later it was our turn to go in. I said goodbye to her and waved at Steven who had now warmed up to me and walked into the Doctor’s office.

The appointment went brilliantly!

He did the usual weight, height, blood pressure checks and then we started to chat about Lucas’ therapies.

He asked me about his early intervention group and I told him that it’s working out wonderfully.

He asked how he was going at Pre-school with his aide…..and I answered: brilliant again.

Next the Dr wanted to know if we’d finalised a school for next year and I answered that yes, that was taken care of too.

He also wrote down the names and numbers of the best speech pathologists that he could think of and sympathized greatly with our dilemma after the last one fell through.

We were just about to pack up and leave when he started to tell me about a social therapy group run by a wonderful lady that he described as a miracle worker for children with an ASD.

Harley playing at the group that he attends on Thursdays

And yep….it’s the same awesome lady that I wrote about *HERE* and Harley has been attending for almost 2 years now.

The Dr looked at me intently and made a remark that has put him in my top 5 all-time favourite people in my children’s medical life….he said:

“Fiona, can I just commend you on how much you do for your children. It really is so wonderful to see a parent like you that has taken your son’s diagnoses and run with them and given it your all. I have no doubt in my mind that your boys will be functioning so well once they reach adulthood that they you will barely remember the harder years that you are in the midst of now. It is only up from here on.”

Well, you could hardly wipe that grin off of my face after that!

I can finally tell all those people in my life who criticise me and my efforts – that it doesn’t matter what they think because my children’s Dr thinks I’m awesome!

Sleep is an enigma here.

 

If only he stayed like this all night *sigh*

Everybody knows that when you have a newborn baby in the house that you’re probably going to have minimal sleep for at least 6 weeks. Actually – scrap that….Most people I know would extend that to maybe 12 months or at least until the worst of the teething months are over.

But what about families like ours where 8 years later there are still no signs of your child ever sleeping through?

~~~

Yep, that’s right, we are still waiting for that to happen with our “newborn” eight-year-old.

Of course there have been days and even weeks where Harley has shown us that it is possible, but sadly, we keep reverting back to nights like last night.  He currently takes mood stabilising and anti-anxiety meds and has done for almost 2 years now and it works really well to help him fall asleep.

But that’s not the problem. Falling asleep and staying asleep are two entirely different things.

I could probably count the number of times on one hand that he has actually gone more than a week without waking us up in the early hours of the morning.  Usually between 2 and 5am he is up at least 10 times. And when he’s awake, he makes sure that EVERYBODY else in the house is also awake.  Harley’s room is at the opposite end of the house to ours and his brother and sister’s rooms are in the middle. Sometimes he will lay in bed crying or calling out (which wakes them up) but most times he walks quietly up to our room and stands beside our bed and calls out “Mum….Dad”..until one of us throws back the covers and marches him back to bed kicking and protesting wildly and loudly so they are woken up ANYWAY!

Rinse and repeat several times per night until you reach our point of utter exhaustion.

How very considerate of him….

Today I had downed 4 coffees, a Berocca multi-vitamin drink and a diet coke by 10 am just so that I could function well enough to survive Lucas’ early Intervention Group. And that’s not only incredibly unhealthy but pretty ridiculous and desperate measures to be taking.

This morning when I walked out to the kitchen to prepare breakfast – I was presented with 3 tired, irritable and sleep deprived kids and a husband who looked like death warmed up who had opted to go into the office later than usual just to catch another hour or so of much-needed sleep.

I have been to the paediatrician about this a few times now and each time he keeps handing me a prescription for Melatonin.

So why haven’t I filled it already?

Well – because it’s expensive for one and secondly because with Melatonin you can’t give it every single night because if you don’t alternate it and have days where you DON’T give it, the child builds up a resistance and it stops working.

It’s those in between days that scare me.

What are we going to do on those days?

At least now he is falling asleep. I shudder to think what he will be like on the days after a melatonin-free night.

I have thrown the question out there on Wonderfully Wired’s Facebook Page and many parents have written their personal experiences to me and I must say that it’s been very encouraging to read.

It help to know that there are several other families out there that have a child like ours and reaffirms that it’s nothing we have or haven’t done to make him like this.

It’s got nothing to do with us not establishing solid sleep routines when he was a baby (Thanks for nothing anonymous mothering helplines).  And it is not because we aren’t strict enough with him. (Thank you too well-intentioned mothers at playgroups).

And I know this because EVERY night at 5:30pm he eats his dinner.

At 6pm he has a bath or shower,

At 7pm he has his tablet and cleans his teeth and is in bed by 7:30pm for a story without fail. And it’s always been this way for as long as I can remember.

Is it just me …or does that look like a pretty solid routine?

And 99 nights out of 100 I stick to it.

From speaking with other mothers of ASD kiddos, most spectrum children have sleeping issues of one type or another. And I have only ever read and heard positives relating to Melatonin.

So tomorrow I am pulling out that dusty script and I am marching down to our local compounding chemist and purchasing what seems to be our very last glimmer of hope.

Fingers Crossed…..

Personally, I LOVE a bit of randomness!

I think I hit the jackpot finding an image of a waffle and a truck together! image via http://www.dribbble.com

Last night at about 10pm, I was sitting down in front of the TV just relaxing when I heard some little footsteps heading towards me. I looked over and saw Harley making a beeline for me. When he was close enough I looked at him and asked him what the matter was.

“I like Sonic” he replied and turned on his heel to head back to bed.

“Hey….wait a minute” I asked him grabbing his arm to stop him from leaving. “Did you come all the way out here just to tell me that?”

“Yes”, he nodded.

“Um, I know honey – you’ve liked Sonic for a while now” I replied.

“Yes, but that was when I was seven. Now that I am eight, I need to tell you again for this year” he said with conviction and then turned around and walked back to bed!

I’m used to this kind of randomness from my boy. One of the first instances of this was when he was about 3 years old (about 18 months before he was diagnosed with aspergers). We were at church and it was Easter time. The Sunday school teachers had gotten all the kids up on stage so that the parents could ooh and aah over the cuteness of their cherubs.

The leader had a microphone and asked several children “What does Easter mean to you?” and held it up to most of the children’s mouths to wait for their answer.

There were the predictable answers and some really cute ones too but when the microphone was put in front of Harley and the question was asked – he stared at it with a blank face and replied with just three small words.

 “I-like-trucks”.

Everyone exploded into laughter and I distinctly remember it like it was yesterday. My little boy was wearing an expression that I’ve never ever forgotten and one that I see regularly today. It was a mixture of hurt, confusion and fright.

I don’t think that he realised that his thoughts came out loud. I’m pretty sure that he didn’t understand the question and that all the sensory stimulation was overwhelming him so much that he had retreated into his “happy place”. He was having an obsession with Tonka trucks at the time so it stands to reason that this was what he chose to talk about.

Like I said – I have never forgotten this but it has only been recently that I have understood that this was a prime example of what we now know to be his one-track mind. And what an awesome mind he has!

Someone once told me that men have waffle brains and women have spaghetti brains. I forget where I heard it so I can credit anyone with it, but I really really loved this!

The analogy is meant to mean something along the lines of a man’s brain being compartmentalised and that they are only able to do one thing at a time. The several single squares on a waffle represent the boxes that men file useful information in so that they can access it whenever it’s required. The boxes are all separate and individually maintained.

Work is in one box which is totally separate from the home square. That’s why (some) men find it a little easier to find balance between work and family life and women not so much.

The spaghetti however, represents women’s brains and how hundreds of strands are intertwined and crossed over and how every little thing is connected to each other and that a woman can process and achieve many things at once and that doing just one thing can be the launching pad for many other things to occur at exactly the same time.

It also explains why (some) women are unable to simply shut off the emotions of a tumultuous family life once they reach the office or leave the woes of the working day behind when they come home to their families.

(This is all generalised by the way –I know that there are of course a lot of men and women who are exceptions to these rules;))

And then there’s the autistic brain.

I have heard it compared to a huge chest where everything is just thrown in all together.

And when the owner of this chest is required to access a piece of information or remember a previous event – they are able to find it and they manage very well without help, but because there’s so much to sort through, it can take a lot longer than an NT person to find what they’re searching for.

That’s not to say that it’s not an organised chest. It may have tidy compartments in there and they are probably well labelled, but because things that make their way into that chest aren’t thrown in haphazardly, and are placed very carefully where they are for a reason…Only the owner of that chest can find their way around it with any success.

 

And once again….this by no means applies to ALL people on the spectrum. I am writing about my own son and what I have observed myself).

Often I will ask Harley a question and see his contorted face as he searches for the correct answer. It can take several minutes for the right one to appear but he does usually come up with it in the end.

But…..if I push him and demand a speedy reply – he will usually give me a random statement or an unrelated piece of trivia because he is trying to substitute by using the first thing that his brain has latched on to.

Usually that piece of trivia is somehow related to whatever his special interest topic happens to be at that present time.

Like the comment with the trucks!

And anyway – I personally think it was a fabulous answer because trucks really are pretty cool, he was only stating the obvious. I mean…..all the rest of the children had already given the correct answer. He was just issuing a community announcement that day after all.

I LOVE how wonderfully wired these kids of mine are! They’re simply amazing little creations . And in case you’re wondering – the reason that he walked out to tell me that he still liked Sonic at 10 o’clock at night?

Simple – he was looping on that thought . Apparently I’d asked him a question earlier in the evening about his party invitations and wanted to know what character he would like printed on them but at the time he couldn’t quite find the answer he wanted to give so he couldn’t sleep until he got it out.

Duh Mum!

And remember…..it’s still Sonic in case you were wondering

Even if it is baby steps – it’s STILL progress :)

Amongst all the drama that has been going on around here lately – there have been some really great things happen as well that I really want to write about before I completely forget about them. It’s not all doom and gloom and there is some fabulous progress that has really gotten me excited. It’s all about baby steps. Nothing major but lots of little baby steps in the right direction. They all eventually add up to miles and miles of huge strides and cover a lot of ground in progress. I want to share these few little baby steps with all my autism Mother friends  :)

I have this framed on my wall. It's all of my children's FIRST steps ♥

Last Thursday (which was Lucas’ birthday – and the day that everything went pear-shaped), Mum and I took the kids up to a local shopping centre with the idea of buying a special birthday lunch for them all but it was cut short due to Lucas’ constant cries of pain so we rushed him straight to the medical clinic which is part of the centre.

While Mum and I stood in the middle of the food court trying to work out the logistics of who was going with who and what we were going to do with the groceries that we’d just bought that needed to be refrigerated, Harley was quickly reaching the point of no return. We were both oblivious to the crowds of people circling us, the music coming from the stage in centre court, the flashing lights and the singing. Our focus was in the moment.

But Harley’s wasn’t.

I glanced over at him just in time to see him suddenly go stiff and stand still with a look pain on his face. He then clapped his hands over his ears and cried out in a pained voice: “I don’t know what’s wrong Mummy…..but I feel really funny and really scared and I need to get out of here”.   He was clearly in sensory overload and really freaking out.

I looked at Mum and we both knew that he had become dangerously close to melting down and that he needed to go outside to escape IMMEDIATELY. No ifs, buts or maybes…..it had to happen or we would pay the price in a big way.

I grabbed Lucas and headed straight for the Doctors and Mum gently led a shaking Harley and Ella outside the centre to a quiet spot where she later told me that she hugged him tightly for about ten minutes until he was able to come down again. Apparently, Ella offered her cardigan to him and he wrapped it tightly around himself shivering and gradually the fear and anxiety subsided enough for Mum to finish the rest of her banking and shopping.

And that right there is a part of autism that I still struggle with even now. The complete bad timing of it all. It has no regard for schedules or whereabouts you happen to be at the time.  If Harley becomes this overwhelmed….it’s like a pressure cooker where the valve just HAS to be released. Life is never simple when it’s just so unpredictable.

But here’s where the silver lining lies:- I’m excited that Harley was able to recognise AND verbalise the fact that he was starting to get out of his comfort zone. He still wasn’t able to articulate exactly what was making him feel so out of control but it is a brilliant step up from this time last year!

We had another episode once we stepped into the Paediatrician’s office the very next day when Lucas was called back in. The waiting room was filled with crying babies, there was music on the radio, ringing phones, tapping on the keyboard and it was crammed full of prams, children and adults . I looked down at Harley and the tell-tale signs were there again. He looked at me and said “Mummy, it’s happening again, I need to escape here”  so Mum grabbed him and took him for a walk before it hit crisis point. What a champion!!!

And on a side note: I’m so thankful that Mum is here at the moment. I have lost count of the number of times that I have been in situations like this and Harley tips over the edge but I have no choice but to leave him in the place that is the cause of his anxiety and he just has to suffer through it.  It’s not easy wrangling 3 kids when one of them is in crisis mode and unable to communicate or cope at all. I simply have to keep him there and try to distract him because there is no-one else to help.  These times kill me because I HATE putting him under this kind of pressure and it’s not fair to expect him to conform when it’s literally eating away at his very soul. 

And even now that Harley is starting to recognise the signs – I still won’t always be able to allow him the escape he desperately. It’s why I don’t get out much and why I refuse most invitations that I receive. It’s just all too hard you see

But I’m not going to dwell on the negatives today. I’m going to rejoice that finally – I think I may have found the perfect paediatrician through all this drama!

I was SO impressed with him and will definitely be back.

The first thing that he said to me when I walked into his office was: “So Mum, you’ve got Bells Palsy – How long have you had that for and what was the cause?”   Once I explained that it was due to a brain tumour I’d had removed – he visibly relaxed and it wasn’t until later that I pieced this all together in my head and understood where he was actually going with that initial question.

I later realised that he was asking me because he needed to rule out MS and other conditions that cause facial palsy in case they might have been related to Lucas’ condition.   I call that thorough. I call that observant and I call that intuitive.

I then realised that he was brilliant!  Most people tell me that they don’t notice my lopsided face nowadays but this Dr noticed it immediately and didn’t miss a beat. He also didn’t treat me like a neurotic mother which sadly – is a rare occurrence in my experiences with the medical field in Australia.

But the icing on the cake with this wonderful man was when we arrived at the hospital and he had a paediatrician in training with him . She asked Lucas a question that he didn’t respond to and Dr Wonderful turned to his student and said “Could you ask that differently please – he’s autistic”..

Hooray!!!!!  He gets it!

I told Dr wonderful at the initial appointment that Lucas’ actual dx is Aspergers but he called it autism! HE CALLED IT AUTISM!

He then proved to me that he is NOT one of the medical professionals who just.don’t.get that although high functioning children are better off in some ways than classically autistic children – he was acknowledging that it is STILL autism and that our kids still need a lot of special allowances made for them.

All is well. Lots of baby steps all in the right direction.

Life is definitely looking up

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.

The Posse on the hill

I’d be willing to bet that they didn’t think I would actually do it I – but I am always up for a challenge and this one is relatively easy for me.

For those of you wondering what on earth I am banging on about – let me explain:

A lovely group of Mums up at the kid’s school were chatting with me this afternoon about my blog. One of them jokingly asked me to write a post about all of them.

I smirked to myself because what they didn’t know was that I had already half written a post in my head after one of the ladies made a comment that had triggered a train of thought for me anyway!

She had said that often they called out “Hi” to me but noted that I rarely responded, but she knew that it was because I am completely deaf in one ear and assumed that I probably didn’t hear her.

And that is true and I’m really grateful that she has been giving me the benefit of the doubt, but it’s actually a lot more than that as well. I actually don’t even notice them either.

You see, most afternoons as I walk into school to collect Harley, my brain is usually caught somewhere between vague and tormented. I rarely look up because my eyes are fixed on Lucas who is known for his absconding and it’s the time of day that I am trying to prepare for the afternoon onslaught of emotional outbursts that are bound to occur.

I guess you could say that I am mentally psyching myself up.

As I walk, I go over the routine in my head so that when we arrive home, things will run as smoothly as possible. I know that Harley needs to wind down from keeping it together all day so I need to make sure everything is ready for his return.

Before I leave for school in the afternoons, I have his crashing corner (complete with cushions, bean bags and pillows) set up so he can get his sensory input so that I don’t become the punching bag, the kicking post and the sounding board.

I have afternoon tea already laid out because another trigger for him is to not know what he will be eating. It exacerbates his anxiety and really is a very easily solved problem.

I have dinner planned and written down on the whiteboard so he knows what to expect and I have his homework all ready to do on his desk.

The things that inevitably throw the order out of whack are little things like sibling rivalry, unexpected phone calls, and rain. He LOVES the rain but it sends him into a trance like state where he is rendered useless when it comes to concentrating or obeying commands!

So, each afternoon as I make my way to the school gate, I mentally tick things off one by one in the checklist in my head and brace myself for my little tornado to be released!

There is another scenario at play here as well.

This one is a little bit harder for me to write about. But you know what?….I think I’m finally ready! It’s more of a personal journey that I have been slogging away at for almost 4 years now and it started way back when Harley began school.

Other autism mother’s will surely agree with me that there is a part of you that is forever changed once that diagnosis is thrust upon your child. It’s like the protective parent gene that we all possess but magnified by about 10,000. It’s kinda hard to explain, but it’s a sense of taking that diagnosis on yourself as well.

It’s been written many times that when one member of a family is diagnosed with autism – the whole family is also. Because it isn’t like a broken leg or a case of the chicken pox – both of those things will eventually end, it is a life-long thing that doesn’t just affect one small part of your child’s life.

It affects EVERY part of their lives.

Triad of impairments which simply put are: difficulties with behaviour, socialising and communicating cover every area of a child’s development and is what all the spectrum have in common.

For me personally, Harley’s diagnosis was like I suddenly took on board all of Harley’s issues, emotions and pain like it was actually ME that was diagnosed. I felt every eye staring at me everywhere that I went, I felt incredibly judged and scrutinised and I was afraid to get close to anyone for fear of either myself or a member of my family getting hurt.

I suppose in hindsight that I can admit that I withdrew from people because it was just all.too.hard.

I was jealous of all the mother’s with their “perfect little NT kids” and I felt ostracised, alone and jaded. I kept my distance for a long time because it was like I had forgotten how to socialise. I no longer had anything in common with anybody and I just couldn’t cope with life.

Cue the nervous breakdown that I had last year when things became far too overwhelming and the elephant in the room that everybody refused to speak about just became bigger and bigger.

This should help to explain my seemingly odd, aloof and reclusive behaviour of late!

Then very gradually things started to look up. I joined an online support group for parents of children on the spectrum and I met a whole bunch of parents struggling with the same daily issues, walking on the same narrow and unpopulated trails and they were able to speak wisdom and love into me again. They “got” me!

They didn’t judge, they understood the heartbreak, the gut-wrenching pain and celebrated the small things with me.

Then I started blogging. I met hundreds of people in every corner of the globe who were also fighting the same fights but with different systems, wrestling with the same teeny tiny gripes and able to offer support and friendship to someone who so desperately needed to be accepted.

God met me where I was at and lifted me out of the pit and eventually, I was able to breathe again without my lungs filling up with disappointment, grief and regret.

I still have a lot of really off days, and I know that it will continue to be a challenge, but I guess it’s time to be out and proud: – I AM THE MOTHER OF 2 CHILDREN WITH AUTISM AND I LOVE MY LIFE!!!!!

And as for you gorgeous posse on the hill – I will train myself to look up, smile, wave and call out “Hi” back.

It’s never been anything personal. I just needed to find the sunshine again

The letter.

How can something so “good” bring out such heavy emotions in me?

Isn’t this wonderful news? Just what we wanted to hear? Shouldn’t I be dancing on tables and buying the next round of drinks?

Well, maybe once upon a time I would have.

For those that are lost by these random statements- let me explain.

I’m talking about a letter. THE letter.

The letter that we received in the post yesterday that I left sealed sitting on the kitchen bench because I was too afraid to open it. The letter that Mr Patient forced me to open this morning and find out what information it held.

It is the letter holding the results of Lucas’ Kindergarten interview that we attended last week. I slowly opened it with shaky hands and tears at the back of my eyes threatening to spill out.

I read the first line slowly.

Dear Mr and Mrs Patient……

We are very pleased to be able to offer Lucas a place in Kindergarten next year commencing Term 1, 2012.

My heart sank and the tears escaped.  I couldn’t stop them.

I was partly thrilled that my little boy was accepted but a bigger part of me is still battling the disappointment that moving up to my hometown is looking less likely now.

We had discussed the possibility of me moving there and Mr Patient staying here and coming up on the weekends if we were unsuccessful at getting Lucas into the same school as his siblings. But now that he’s in, that’s not really on the cards anymore. There’s no need to go.

Ok, I confess. I got excited at the prospect of moving and I kinda got my heart set on it right from the very first time that the idea was mentioned.  My Mum, my best friend and countless other friends live there and the kids love the place and know it well. The laid back lifestyle that I grew up in and the idea of everything being no more than 5 minutes drive away was so exciting to me.

I had already dreamed up images in my head of where we were going to live, what school they would attend and how much easier life in general would be with help only a simple phone call away. I would no longer have to drag three kids to every Dr appointment, therapy and meeting. I would have people who could help me.

But the wheels started to fall off when we did the maths and added up the costs of Mr Patient flying home every weekend and it was becoming clear that this wasn’t going to happen.

The way things are at the moment – Mr Patient leaves before the children are awake in the mornings and is often home long after they go to bed at night.  He doesn’t have any idea what we do every day , he knows nothing about any of their therapies and interventions and this morning – he was unable to even tell me the names of his children’s teachers at school.

His excessive travelling means that I virtually do it all alone ANYWAY so moving wouldn’t cause the kids to see any less of him……

But now Lucas is accepted, my dreams are shattered AGAIN!

I need to get my head around the fact that we are staying put. I need to accept that short of a miracle, I will continue to do this alone. And I need to learn to rejoice in this.

Three kids.

Two with autism who require more than I can give.

One mother who is throwing herself onto God more than she ever has before.

Either that or have another nervous breakdown.

Head….meet sand. 

The “G” word…

Sometimes, answers can come from the strangest of places. And by strange, I mean from somewhere that you least expected it to.   

Somewhere you’d never have imagined and from someone who you barely even know.

BUT – God works in mysterious ways!

If you click here you will read that this blog was always intended to be a place where I could write about whatever I needed to at any given time NOT just about parenting children with autism.

Of course- it all ties together in the end because autism is so intricately woven into every single part of our lives. But this is not a specifically autism related post per se.

I will start this post off with somewhat of a “warning”.

This post is going to be a deep one. It’s going to be a little long and probably a bit confronting for some people.

It is full of my life story and if you don’t read through until the end, it may seem like a bunch of annoying complaining, but if you do choose to read, you’ll see the awesome self discovery that I’ve made and you might even see your own life in a new light.

Who knows?

Right. That said – I’m going to do a quick flash back to my last post where I admitted that I have been struggling a lot with depression lately.

I ended that post with words to the effect of: Autism is the root issue of everything that’s difficult about my life.

A few hours after I’d published it, a very close friend wrote to me and said that she had just finished reading it and that she didn’t feel that autism really was the reason for all my sadness and pain. She said that she believed that autism was just a small part of the bigger picture but that she didn’t quite know what “the thing” was.

I actually completely agreed with her – but because I was still unable to figure out why on earth I seem to struggle SO much more than other autism mothers (maybe it was just my own skewed perception), I assumed that autism was to blame.   It was something that bothered me endlessly and I needed an answer and that one was the most obvious choice.

Anyway, one of my regular readers and commenters, a lovely woman whom I have never met (but hope to one day) wrote that she thinks that I am still in a period of grief. And as soon as I read that something inside of me shouted YES! That’s it!

I KNEW that there was something in that!

And I don’t believe that it’s all related to my father passing away a couple of short years ago. I found this wonderful passage in a psychology book (of all places) and it was spot on as far as I’m concerned.

“Many assume that grief is associated only with the loss of a loved one.
Psychology shows us that this is very often not the case, but those suffering grief from things other than the death of someone are often told to “snap out of it.”
Grief is, quite simply put, a response to loss.
The loss can be of something tangible or intangible. It helps to recognize that disappointments, abuse, recognizing one’s limitations, illness, losing a job, or so many other things can elicit a grief response.
People suffering a loss need time to grieve, and such time depends upon how important the loss was.”

W-O-W!

YES! That’s me!

Let’s see: In 2 short years, I had 5 major surgeries. Check.

The brain surgery being the biggest at a whopping 13.5 hours long – complete with a collapsed lung and the recommended recovery period from this is 2 YEARS!

I had an undiagnosed/ aggressive/ insomniac autistic 18-month-old child on my hands at home so recovery wasn’t really an option.

9 months after that, I had my corneal transplant then found out I was pregnant with our unplanned “high-risk” baby Lucas. Check.

Consequently, I had a general anaesthetic c-section followed by a tubal ligation and ALL of these took place in the time that I was “supposed” to be recovering from brain surgery.

We had the added stress of our finances being incredibly stretched due to all of the medical bills I’d racked up (You’d think having brain surgery to remove a 5cm tumour would be covered under Medicare wouldn’t you?) And not to mention the exorbitant costs related to the corneal transplant too. Check.

And just after Lucas was born, I had to undergo surgery for the 5th time to get my gall bladder removed. (There were 90 something peppercorn sized stones in my sterile jar if I remember correctly!) Check.

Then my dear Dad was diagnosed with cancer and shortly after I contracted glandular fever and due to not being able to recover properly– my Doctor told me I was borderline chronic fatigue. Lovely!    This possibility scared the wits out of me so emergency procedures were put into place and Mr Patient was forced to take time off work until I was well enough to carry on. Check.

A few months after that, I received a phone call from my Mum asking my sister and me to go home immediately because the Doctors had told her that Dad was on his deathbed.

We rushed home and he died a few short days later. Check.

6 months after losing Dad, we were slugged with Harley’s autism diagnosis and it was about then that I started blaming autism for everything that I hated about my life. Check.

And while we’re talking about grief – there is definitely a grieving process related to the discovery that your child is “different”, (though I do believe that my kids can do whatever it is that they choose to do and that they will do it well!)

I went to a counsellor and she ordered that I be medicated before she’d even attempt to talk to me again. She diagnosed me with “acute clinical depression” (Whatever that means!)

I didn’t see her for very long because it got far too expensive and she was difficult to get appointments with plus I had no-one able to mind 3 small children for me. I did however find another counsellor that I was able to see during school hours and had a wonderful baby sitter for Lucas – but that was also short-lived due to the time constraints and travel involved.

It’s times like THIS that I find having no family to help out really tough. You can only ask friends to help out so many times before you wear out your welcome no matter how many times they say they’re happy to help.

The simple fact here is: I haven’t had time to grieve ANY of these things that have gone on in my life because they have all happened so closely to each other and they have kept compounding and building up and it TOTALLY explains why there always seems to be a pressure cooker ready to explode in my brain!

Now that I know that it is grief that’s holding me back , I can finally stop blaming myself for not coping as well as everybody else.

I can stop wondering “WHY” I suck at things that other people seem to just drift through and I can now actually believe it when my Mum tells me that I’m NOT a basket case & I’m NOT a crappy, disorganized, useless mother – I just have a lot on my plate and I have a lot of grief to work through!

It’s the keeping it real factor that I have been struggling the most with.

I have always found it REALLY difficult to “put on a happy face” when I feel like screaming.

I’ve struggled to “appear” normal for fear of turning people away.

And I honestly physically hurt whenever I tried to be something I’m not. I know my intensity can be scary and my emotional rollercoasters are annoying – but I’m still a work in progress here.

I’m living, learning and growing.

I’m still grieving, but the thing that excites me the most is that I have discovered that I am up to step 4 in the 5 part grieving process of:

Denial

Anger

Bargaining

Depression

and

Acceptance!

 

So guess what?……… I’m almost there!

See you on the other side!

 

And thank GOD that I have God on my side

The pain of not knowing.

And so ends another school week.  

It is now only the 3^rd week back since the Easter holidays and Harley has already had enough.

He’s decided that school is not for him and told me that he thinks he might stay home from now on.

So …yeah….great news eh!

I think that the major issue that we’re dealing with (and have been since day dot with him) is anxiety.

I mean…..How many kids actually chew off their knuckles because they’re not coping?

He is also still struggling with impulse control (of lack thereof!) and the ability to predict the consequences of his misguided actions, and has been in trouble EVERY afternoon at home this week just for doing really really silly things.  *sigh*

It does help a little by knowing that the anxiety in him is all part and parcel of having an ASD, but just simply knowing doesn’t make it go away.

No – I now need to find some more effective ways of working with him to overcome these massive hurdles because we’re tripping on every damn one of them this week. Everything that I see him doing at home , all come under the 5 major diagnostic criteria points for aspergers syndrome.

****

Firstly, we have : Communication impairment – Harley is unable to effectively communicate the “whys” of his behaviour to me and is only able to say things like: “Because my body tells me that I HAVE to do it”. (It sounds like a pretty well cooked up excuse but I know that he really DOES have uncontrollable urges and these frighten me).

He KNOWS that he isn’t coping but because I really don’t believe that my boy even understands the reason why himself – he is unable to convey it to me so it all comes out in meltdowns and aggressive behaviours instead.

Another characteristics of AS is : Social impairment – Lately Harley has been blatantly rude and disrespectful to me, and has said some really inappropriate comments to anyone who crosses him. He isn’t suffering fools kindly – if he doesn’t like you – he’ll tell you.

I hate this and it goes against every value that I am trying to install into my kids.I desperately want to train them to love one another and to treat people with respect but there’s really no point explaining to him that he’s being rude until he’s in a clearer frame of mind, because otherwise it simply goes in one ear and out the other.   And sadly, those rarely seen calmer moments are few and far between at the moment.

He’s also having his: sensory sensitivities attacked at the moment. This is a major contributing factor to his anxiety and is apparent right now in his aversion to eating anything but plain rice, gluten-free bread gluten-free pasta and crackers. I have had massive dramas by trying to even feed him this week.

This anxiety/sensory aversion merry-go-round is ridiculous and is quite the vicious cycle.

The difficulty with change issue is also a biggie this week because Mr Patient has been away with work for most of it.  Even though travelling with work is something that happens regularly – the unpredictability of it throws Harley into a tailspin every time. Even when we I think I’ve adequately prepared him, he still gets greatly affected by this major change.

And lastly, repetitive and obsessive behaviours. This one sucks. I hate it because it drives me crazy.  I hate watching my son lining things up, counting and re-counting AND recounting things over and over again in a desperate attempt to soothe himself.  The pacing, the rocking, the stimming and the rituals have been kicked up a notch (or twenty) this week.

He is experiencing a lot of physical symptoms too. (Stomach pains, headache, insomnia and big bouts of inattention and irritability).

So….what to do?

I honestly don’t know right now.

I don’t know where to start because I don’t know what’s going on in his little brain.

What I would give for even a small glimpse into his inner workings. *sigh *

I DO know however that I will be spending a LOT of time in prayer and trying to rest in the knowledge that even though *I * don’t know the answers: I serve a God that does know.

And that simply has to be what I’m clinging to right now.

Have a great weekend all…..

♡

Fi x

Confessions of a helicopter parent.

According to Urban Dictionary:  A Helicopter Parent is a parent who hovers over their child, is controlling and extremely over-protective.

Well yes, I guess that term is very fitting when applied to a parent who is unwilling to cut the apron strings from their typically developing child and let them discover life on their own BUT, in my opinion…..this term should not EVER be applied to parents of children with special needs.

For most of us – it is definitely NOT a choice but instead – a necessity.

I would LOVE to be able to just drop my child off at school in the mornings and go about my business but you see….this is a pipe dream for me. I don’t hover because I don’t trust the teaching staff or the school…..I hover for MY SON’S sake…..NOT mine.

And that  my friends, is where I believe the difference lies.

When God blessed the parents of spectrum kids with these children, he also gave us enough grace to deal with the massive responsibilities that come as part of the autism package.

The simple fact is that with autism spectrum disorders- part of the diagnostic criteria is that the child has impairments in socialising, communicating and has restrictive or repetitive behaviours.

 

And in essence, what that means is that throwing your child in the deep end and letting them dog paddle their way through is not only stupid but very very cruel!

***

I have a very emotional story to tell now and I need all of my autism mother friends to wrap their virtual arms around my shoulder as I write because I’m particularly fragile this morning.

Ok?

Thanks..

I sent Harley to school today with both of his hands bandaged up because he has let his anxiety overwhelm him again.

He has licked, sucked and literally chewed his knuckles again until they bled. They are red raw, weeping, bleeding and really majorly gross to look at. He is in dreadful pain and was whimpering as I gently bathed and dressed his wounds this morning and it broke my heart to see him like this.

He looks like a little teddy bear with his paws all wrapped up and as a result, is unable to perform simple tasks like cleaning his teeth and getting dressed unassisted.

I went up to school just before recess to drop off his blazer that he had forgotten and signed in and went down to his classroom to change the dressings on his hands.

The beautiful office ladies would have done this for me but I knew that Harley wouldn’t have responded well to someone else touching his sore hands so I opted to go in myself. (yes, that’s right…..hover, hover, hover).

He was SO excited to see me and Lucas. He ran over to us giving us both HUGE cuddles and announced loudly that his Mummy was here and telling all his friends how much he loves me! (I developed a speck of dust in my eye as you could imagine!)

I hugged him back, took him aside and re-dressed his hands and helped him to get his blazer on. He went back to his desk and sat down and arranged his books in front of himself proudly.

I told him that it was time for me to leave now and that Mummy would see him in a few short hours. He nodded and said his goodbyes to us.

I walked over to the teacher to say goodbye and she started chatting with me about the great progress that she’s noticed in him lately and I beamed with pride.

All the while, Lucas was tugging on my leg so eventually I followed his pointed finger with my eyes and then I saw it.

Harley was leaning forward with his head down, staring at his work. He had his pencil awkwardly grasped in his bandaged hand with tears streaming down his little face. He was TRYING SO DARN HARD to be brave but the tears kept flowing. I watched him wipe some of them away with his little white paw and I could tell how much strength this required on his part.

I walked over to him, crouched down and put my arm around his shoulder and asked him what was wrong.

“I can’t do what everyone else does Mummy” he answered.

“What do you mean honey?” I replied.

“I can’t even hold my pencil, I can’t read and I can’t stinkin write, I’m so stupid” he sobbed.

“YOU ARE NOT STUPID” I practically yelled, LIVID that my boy’s anxiety was consuming him and I started to wonder if coming into the classroom was such a good idea after all.

His gorgeous teacher stepped in and assured me that she would look after him so I thanked her and gradually made my exit once I knew he was ok.

I DO trust that his teacher can deal with this. I DO trust that she has only his best interests at heart but I want everyone reading this to know:

My kid ALSO needs me.

Call me whatever you want. A helicopter parent, a smother mother, a freak, WHATEVER, but when my child is in this much pain just from a task as simple as “being” in a classroom full of kids who can naturally do all the things that he struggles with….. I will not back down and leave him to his own devices.

It’s not a simple case of parental separation anxiety here.

I am not trying to control the school, the teachers or the environment.

I just want to parent my child responsibly and effectively and for ASD kids – that means hovering, asking questions, making requests and sometimes….being a pain in the butt.

I WON’T apologise for being my child’s biggest and loudest advocate. I do not want to look back in five, ten, fifteen or twenty years time full of regret that I didn’t do more to help him navigate this frightening and overwhelming world that we live in.

And I will ALWAYS be the parent that you see waiting patiently by the classroom door to “have a quick chat” with his teacher.

I don’t want to know if he aced his spelling test, or ate his sandwich or got all his sight words correct….I couldn’t care less about these things…..I just want to know if my little boy managed to simply survive!

So if you’ll now please excuse me ….this helicopter needs to go and re-fuel – tank is getting empty : )

I love you but you puzzle me!

I had a new post all ready to publish tonight but my computer threw a wobbly before I saved the draft *sigh*.

I couldn’t be bothered re-writing the whole thing again so I’ve decided to repost this poem that I wrote for my boy last August when I was going through similar emotions with him.

For my precious Harley,

If I could peek inside your brain,
I wonder what I’d see,
A bunch of wires with knots and twists,
all woven randomly?

Perhaps the buttons that help you speak,
have been left on “repeat”,
And movement wires have shorted out,
the anchors for your feet!

I’d love to learn just what goes on.
inside your awesome mind,
I know that you are “oh-so-smart”,
I would be left behind!

I know that there are parts of you,
that wish you were the same,
So you could play with other kids,
and understand their games.

I’m sure it hurts when you don’t know,
just what on earth’s expected,
I hate to see you all alone,
and looking so dejected 

But what these kids have failed to see,
is how unreal you are,
Your passion, love and loyalty,
exceeds the norm by far!

I know that life is going to bring,
you challenges small and great,
But never forget that through them all,
I’ll stay your closest mate.

Love you tiger even though I don’t always understand you.

XX MUMMY XX