Been away

Its been a long time since I posted my last blog. This is mostly due to the fact that I am away from home right now travelling.
Its when I am away that I realise how much I don't miss home but I miss Harley. There are certain aspects of him I will never miss such as cleaning up nappies, showering him and trying to get him to grocery shop. However Harley always reminds me of home and the craziness of my life. I guess when I am away I don't have that full on-ness that comes with Harley- I don't know how to relax. I crazily miss the spitting and the cups being thrown at my head, I miss his outrageous laugh and his personality.
I always think about Harley and wonder does he understand where I've gone and what I'm up to. I wonder if he knows what he's missing. Then I think wouldn't it be great if he could on a holiday with me, but this is impossible as he is just too difficult to take on holidays let alone a plane.
My Mum is away at the moment with me too and I have been watching her struggle to adjust with out Harley around. For the first time in 34 years she is having a holiday away from Australia, away from work and away from Harley. For the first couple  of days I watched her wake up and walk around my flat completely confused as to what to do with herself. She would make toast undisturbed, she could shower undisturbed, she could watch television undisturbed, she could even walk down the street without Harley dragging on her- a new concept to her. After a week of adjustment, she's coping fine though a little restless still.
I guess it's a good thing that my niece and her grandbaby was born this week, it will give her a whole different kind of nappy to change

Harley wearing a smock by Lois

 

This is harley wearing the bib that Lois made for him. Thanks Lois I think these are a great idea! 

Harleys afternoon tea

Harley enjoying his yummy arvo tea at my parents restaurant. This is just before I got covered in coleslaw and red fanta.

lets spit on it

When Harley was younger he had a terrible spitting problem. He would spit to get your attention. He would spit to annoy you. He would spit just for the hell of it. Thankfully he grew out of this sociably unacceptable behaviour. Until now. Since having his wisdom teeth out he has developed the habit again, rising out of the depths of his glands with a vengeance.

We try to ignore it with the idea that he’ll grow tired and stop doing it. So far he’s not bored. He spits day and night. He spits at the dog. He spits at his carers. He spits at strangers. He spits at Mum and Dad. And he spits at me.

So today I snapped. Why not fight fire with fire? Or in his case saliva with saliva. I was standing in the kitchen and swung around face to face with Harley. In a clear instant and with no time to protect myself, he shoots a giant loogie into my eye. How he got me with such precision is commendable however the fact that it was my eye breaks that little bit of patience I have remaining. With the thick slobber dribbling from my lashes, I dig deep into my throat drawing out as much moisture as I can. Before he can run away I grab both his arms and hold him so we are once again face to face. I purse my lips and spit. It sails through the air in one complete blob and smacks into the side of his cheek. He looks at me stunned. I jut my chin at him and think victory is finally mine.

As I turned to walk away triumphantly, I hear the familiar pfft of his lips and feel the warm watery spray. Furious and defiant I turn and spit again. He retaliates. I retaliate. Him. Me. Him. Me. With Mum watching in the wings, no one is backing down. Back and forth it flies. He mocks me by laughing hysterically. Maybe he is laughing because he knows I won’t last longer than him. I start to weaken. I’m a rookie at this spitting business, Harley is a pro. The pro. I’m disgusted and defeated. I walk away, knowing I haven’t felt the last of this.

Now as I write this blog, Harley is perched around the corner waiting for me to emerge. Almost primordial he leans his head into my room and spits asserting his alpha dominance. He shuffles back toward the banister of the stairs, I know he waiting for me to walk underneath it so he has his chance at an aerial attack.

Dead rising

I have an overactive imagination. I often sit and concoct theories as to why Harley is the way he is. I know it’s genetic but is there a philosophical logic as to why he is the way he is?

I have concluded that Harley is a serial killer. Well maybe he was a serial killer in a past life. Now before you start judging me, I will enlighten you with evidence that Harley could be the new restoration of Ted Bundy, Charles Manson or even Aileen Mournos. 

It all began several years ago when I spied Harley watching a horror film with my brothers. It was particularly gruesome and at the moments he should have been turning away and squirming like any sane person, Harley was laughing his head off. I didn’t think anything of it at the time.

A couple months later we sat down to watch Shaun of the Dead. The film begins and at the first bloody decapitation Harley is pissing himself laughing... Literally. After I clean him up and we resume watching the film, Harley is hysterical from woe to go. The bellowing laughter peaks at the sight of hanging limbs, slashing guts and through the climax of flesh eating to the tune of Queen. This has become Harley’s favourite movie of all time and he attended my 21^st dress up party as a zombie.

His fascination with the macabre doesn’t stop there. The more B-grade and grisly the film the more he enjoys it. Dog Soldiers I believe is in the top 10 along with Planet Terror, Dawn of the Dead, Day of the Dead, and Resident Evil. He likes it when the film is a straight up gore fest and hates watching horror films that try to have a substantial story line. Forget the thrillers give him the slashers: Harley never turns away and watches with acute attentiveness for those cringe worthy moments. He rips apart laughing at the sight of some imagined creature ripping apart the body of its prey.

This is where my imagination takes over. I often see Harley trapped in his body. I imagine that he is a serial killer trapped in their and forced to see the world from a passengers perspective. Is he unable to talk and do anything for himself so that he is forced to experience love and compassion without being able to run away? Is it ironic that he is referred to as an Angel? Maybe this is his Karma. Or maybe it is just a genetic mutation. We all have our theories, mines just a little less romantic and a lot of far fetched. 

A message from Lois

This is a message from Lois who contacted me,


When my growing granddaughter, who has AS, couldn't be fitted with large enough bibs, I took out my sewing machine to solve the problem. I showed the resulting smock to friends, who loved it, and my project, Sophie's Smocks, named after my granddaughter, was born so that many kids with AS could have a free smock.

I buy new and gently used turtlenecks and trim. Supporters donate their time to cut and sew, and their money for postage and materials to keep the project ongoing.

All the smocks are FREE for children or older with AS. I make child size 6 to adult XL.

To get a smock, all you have to do is ask by emailing smocks@cox.net. Give me your child's shirt size plus a name and mailing address including zip. I'll send one as soon as I can.
There's no catch and no obligation.
Lois

Stiring the pot

I was making pasta today for dinner. The first time in history Harley walks up to the stove and tries to stir the bolognese sauce, then he turns to me and tries to lick the spoon. I have never ever seen him do this and its really exciting to see him trying to do something different. I squealed with delight and luckily had my phone in hand to capture the moment. I know to some people this might not seem like a big deal, but it is to me. It gives me hope that he is understanding everything that is going on and trying to develop his abilities. Now if only he'd learn how to do the dishes and the world would be complete.

Its all in the head

Last night I bounded out of bed at the speed of thousand gazelles. That slick feeling of dread rushing over me, adrenaline surging as I burst open Harleys bedroom door. He’s laying there just he had been when Mum tucked him into bed. He raises his head grumpily and looks me in the eye as I flick on his light. Thank god, I think to myself, He’s ok. I can read his thoughts and know he’s saying, piss off woman stop disturbing the little sleep I get.

When Harley was younger he had terrible epilepsy. I mean seizures every day, and they were horrifying. Epilepsy is very common among “Angels” and it is so complicated that it is often difficult to regulate. Anyone who’s ever witnessed an epileptic seizure will understand me when I say it is the hardest thing to ever sit through. And that’s all you can do. Sit. Watch and wait for them to come around. Be there for them when they are conscious and the pain hits. Thankfully Harley grew out of his epilepsy as he got older. Sporadically he’ll have a seizure but they are very few and far between.

I remember one evening I was brushing my teeth in the bathroom opposite Harleys room, I heard him. I thought he was dreaming or rolling around his bed. It sounded odd though. Unhuman. I decided on a whim to check on him. I pushed open his slightly ajar door and there he was gripped in the throes of a seizure. His back was arched and his hands twisted like that of an old tree root. I jumped on the bed; I knew I had to get him in the recovery position but how? I’d seen Mum do it before, it should have been easy. Instead panic took over and I sat there holding him. I screamed for Mum, at first I couldn’t get the words out and on the second attempt I didn’t even recognise my own voice. Mum and Dad run upstairs and Mum efficiently took over. I was eleven.

A few years later, I’m in bed and I hear an odd noise. I think nothing of it. About thirty seconds later I hear that panicked screech for Mum. I leap from my bed. There in Harley’s room, my brother is scrambling to roll Harley into the recovery position. I recognise that same fear and panic in his eyes. I get there before Mum and help roll him into position. Mum gets there, and then Dad and we all sit together. We sit and we watch. We watch the confusion cross Harleys face every time he thinks he’s coming out of it but then gets dragged back in. We hold his hand and we sooth him. We try to hold back the tears. Finally it stops. He cries and that’s the best sound in the world. Mum sits with him all night, while he cries from the headaches. No one sleeps that night.

For the next year I checked on him every night. At the slightest sound I would soar out of bed and run to his room. Nothing was ever wrong. Yet every night I’d go through the routine of checking on him. Eventually I learned that it was ok but every now and then I feel that same sense of panic and I just can’t help running to his room.

Financially, you’ve hit a nerve

I read an article in the paper this week that downright enraged me. The tiny three paragraphs of black and white stated that doctors are over diagnosing children with Autism and Aspbergers to secure greater disability payments for carers/parents of children on the spectrum. As a teacher I know that schools get a huge subsidy and more funding when they have supported learning and kids with Autism or Aspbergers enrolled in their programs. To satisfy my curiosity I decided to do some research. And this is when said rage took over.

In Australia, if your child is diagnosed with Autism you automatically get a $12000 lump sum from the government on top of your disability payments, no matter how severe the diagnosis is. This $12000 is intended to go towards therapy, schooling, medication and “hardship”. Conversely, in the end the parents can spend it however they see fit- like buy a new 58inch flat screen. In Australia, you receive nothing when you have a child diagnosed with Angelman Syndrome. That is ZERO. NADA. ZILCH. NAUGHT on top of your weekly disability payment, and trust me no one could live on that sum alone.

 All Angelman’s cases are severe. It means Angels will always be fully reliant on a carer to get through life. There is constant “Hardship” on anybody who lives with an Angel. Harley will not go to school and will not have the opportunity to develop mentally beyond a toddler. Over the years Harley has jacked up a fair amount of medical bills. As a baby he couldn’t swallow and needed constant therapy to finally be able to eat solids. He didn’t start walking unaided until he was nine. He still has a bad hip. In the early stages of epilepsy he saw neurologist after neurologist. He can’t see a regular dentist or doctor. He’s seen more stitches than a sewing machine from his countless tumbles. Where was my Mums payout?

Ultimately Harley costs a lot more financially than any Autistic child could. Every day he wears nappies that cost $2.50 each. He eats like a growing boy. He relentlessly wears through his clothes because of how rough he is on them. He goes to a disabled day care that costs over $600 a week in tuition. Not to mention all the other incidentals in his life.

So why is it, that Angels (and any other disability for that matter) are not getting the same amount of funding as Autism? Is it because people can see improvement with Autism? Do Angels not have face out there? Do we have to wait for someone to get into government that has an Angel to see any change to the system? Until some politician wants to change the policy to benefit them?

The next time you’re donating to a charity, think about donating to a charity that really needs it because there are some things the government just won’t give a hoot about.

If its brown, flush it down

It is so aptly stated, Shit Happens. This colloquialism can cover a range of meanings in life but in the end, it’s inevitable, shit will happen.  In Harley’s case it will happen every couple of days. My friend once commented that I am not abashed to talk about pooing, farting, burping or another bodily function.  I think when you have to clean mud pies off someone else frequently enough, you’d become desensitised too.

Harley’s bodily function has long been the topic of hilarity in our house hold.

Take for instance the time mum found a small semi deflated blue balloon in his nappy. How it had passed through his digestive track and come out the other side intact remains a mystery. How he swallowed it in the first place and not choked could have been the feature on the TV show, Unsolved Mysteries.

Or take the time when he had really bad constipation and when he finally went he clogged up Grandmas toilet. Imagine four grown adults standing around a toilet trying to work out the physics and engineering to get the gargantuan thing to flush before grandma got home. Let’s just say Grandma was less than impressed when it took a whole day to finally go down.

Our holiday house was 9 hours from Sydney and not a family trip went by where Harley didn’t do a poo in the car on the way there. One of my most vivid memories was sitting in the back of our 8 seater van, watching Harley as he screwed up his face and pushed. Us kids thought it was hilarious. Harley thought it was hilarious. He always laughs when he does a poo. I think he knows he’ll be the one having the last laugh at us.

In our house hold we always pray that Harley will poo when his on somebody else’s watch. Be it another sibling, Mum or Dads. We secretly rejoice when we pick him up from day care and they so politely say “he did a big one today.” It means it will be at least another three days before another.

Harley isn’t toilet trained. As a child my Mum worked with therapists to try and establish some sort of toileting routine. Mum isn’t one of those people to stick to something when it gets a bit difficult and I think raising six kids at the time, she was a little short of time to worry about it. In hindsight she regrets this decision. It is one thing to change a toddlers nappy, it’s another to change a six foot 85 kilogram mans. Imagine if you had to wear a nappy?

Whenever Harley relieves himself he has to be showered. I’m going to let you use your imagination when thinking about what it looks like to meadow muffin your pants. My eldest brother describes cleaning poo out of Harleys bum as violating for both parties- you have to stick your heavily gloved hand in there and scrub it off. Almost like a scissoring effect.  

With that imagery I warn you, this won’t be the last we discuss this topic. After all Shit happens.

Saturday night

I'm about to go out. Dressed up as a lion tamer for a circus themed party. Harley is really misbahving himself. I came down stairs and sat next to him on the lounge. He leans over and pulls my hair. Fabulous. He then gets really agrivatted and throws all his weight into the side of me and starts trying to punch me. He' really angry. I stand up and move. He gets up and follows me. He stands infront of Mum. He's trying to block her and me from having a conversation. He has a very jealous personality and nothing gets between him and Mum.
He then chases me around the kitchen. Palm of death to the face but he misses me. I side step. Duck and dodge out of the way. I give up and leave the room. He'll cool off soon enough.

What is with the attitude? Do other angels act like this?

All that is missed

My sister’s having a baby. It has been the most exciting and anticipated news in our house hold as of late, even though we are watching her progress from another continent. The little affectionately known sproglette will be the first grandchild, I’ll be an aunty and Harley will be an Uncle. 

No matter how many times I hold up the picture of my sister and her burgeoning belly, Harley doesn’t see what that title should mean to him.  He won’t be able to cuddle it and appreciate that new baby smell. He’ll spit at it, but can he kiss it? Everyone will be on eggshells when they are near each other, not knowing how Harley will behave. He has a love of bear hugs, and it doesn’t matter what’s in the way of him and his target. 

I’m getting off topic. The new baby has just got me thinking about all the things Harley will miss out on and all the things he has missed out on already. Our family is very close on my Mother’s side. We spend each summer passing the time by going to music festivals. At any given time there’ll be nine of us dancing away and drinking in the sunshine, and when people ask who we are there with, we unashamedly introduce them to our friends who are our cousins and siblings. 

Harley misses out on this. He can’t come to music festivals with us. Nor was he able to come snowboarding when my three siblings and I went. He wasn’t able to travel with my brothers last year when they starred in their own two month Japanese version of The Hangover. He won’t be able to pick up his bag like me and say, I’m off and I’ll see you in six months. A credit card bill will never faze him. He’ll eternally be the passenger in the car. He won’t experience the excitement of his first date. He’ll never be his brother’s best man. He won’t have kids. He won't be able to take his niece to the Zoo on his own.

I try not to think about it, because it breaks my heart. I know it breaks my Mum’s heart too. I see it in her eye’s every now and then, when she doesn’t think anyone notices. It usually happens when something significant is happening in our lives, that of my brothers and sisters or my parents. My mum looks at him. That crack appears on her perfectly formed smile and her eyes flicker ever so slightly as it creeps into her thoughts. She’s happy, for us but she knows this is just another thing Harley will miss out on. I’m not a parent; I don’t know how that feels for her. 

There is a lot Harley has experienced though. He knows love from a family. He will always be taken care of. He has a sixth sense for the good people in life and for those who have unkind souls. Harley has to experience the world in a different way. I know he understands everything that is going on. He just can’t tell Mum to piss off when she insists on dressing him in pink shirts and man sandals. 

Today’s blog wasn’t intended to be so affecting. I just want you to know, that everything you do in your life no matter how great or bad it is- you have the choice to do it. So keep calm and carry on.

The Simple World of an Angel man.

For those of you who do not know Harley, or understand what Angelmans Syndrome is I have attached this link.

http://www.youtube.com/watch?v=Hp3PgG965PU

My brother made this film about Harley several years ago. I think its beautiful, poignant and sheds light on this syndrome from another point of view. I hope you enjoy it.

Weather you love to learn a tune

I receive an emergency phone call today from Mum asking if I could leave work early and pick up Harley from his day time care. I agree and find myself on my way to pick him up. Its not the act of picking up Harley that is the trouble, its the car trip home. Its distracting and hilarious at the best of times. Harley thinks its appropriate to try and hug the driver, undo his seat belt and spit at the driver, however this is tolerable but add in the horrendous weather conditions and its downright nerve racking.      
You see, a while ago I thought in my infinite wisdom, that I would teach Harley how to use my car stereo. This involved trying to change the song on the CD, switching between radio and Cd and altering the volume- on his own. I showed him where I kept the Cd's so he could pick them up when he wanted to change one. After several days of placing his finger on the tracking button, and forcing him to roll the knob to adjust the volume, I patted myself on the back and thought well done, you've taught him something new. Well didn't that backfire in a cloud of dusty smoke.

Anyone that's met Harley knows his fingers resemble Bratwurst sausages, caused by the years of sucking on his hands. They are fat, callused and overall unsightly. He is also not the most dexterous person you'll meet.
Instead of changing the songs by pressing the tiny tracking button, Harley now just mashes the stereo controls. It gets a result, but now always the right one. He hears the changes, and thinks his done the right thing. I become agitated at the hypertastic overhaul of my hearing, flicking between the radio (that doesn't work) and the CD that blares (even on level one). I thought he saw it as a game. How many times can a mush the buttons and grab at the Cd's at once? Can I fit 15 Cd's in my mouth? What happens if I throw 15 Cd's out the window? How loud can the stereo go before we both become clinically deaf? Can I really hear ghosts through white noise?

But I realised, he doesn't always see it as a game. Funnily enough we have completely different tastes in music. Like most people my age I like Indy rock, folk rock and any other band you'll find playing on Triple J. Unlike most people Harley's age, he loves girl pop, disco and show tunes circa 19something- think ABBA, Aretha Franklin and the Beach Boys. Though he can't speak, he loves a good sing-a-long especially when I'm singing to him (trust me, I'm no singer). You can tell when he loves a song. He first stops and listens intently, a critical look crosses his still jaw. On his acceptance he scrunches up his fingers, places his hands over his face and lets out the loudest, hysterically gleeful bellow.

So back to today, its pouring down rain, and I buckle Harley into the passenger seat. I have a new mix CD, Harley listens to the first song, and immediately starts that theatrics attempting to change the song. We skip again, and again and again. He stops. The opening piano of Runaway by Kanye West, finally we agree on a song. No, think again, he switches the song as soon as he hears the opening line. He picks up the 9 CD's sitting on my console and proceeds to throw them on the floor. Nope, back to the CD player. Button for radio. Volume. Button off. Button on. CD. Oops radio again. CD. Track back then forward.
Seventeen skipped songs and a whole lot of radio static later, he has found a song he loves. The tell tale signs of excitement hit fever pitch as Harley realises his teenage dream with Katy Perry. His hands cover his eyes and he roars with laughter as Katy moves into the crescendo (always one for the show stoppers). The song ends, I replay it to him...louder.  He is so unabashed to his love for the song, and in the process exposes my guilty pleasure for sugar coated pop. We play it a third time, me singing at a pitch that would shame Kylie Minogue, Harley's hysteria taking over. Finally we reach home, and I'm exhausted. Harley is hyper. Great! Next time I think of teaching him something new, I'll remember the stereo incident and wonder is it worth the hassle of a daily struggle between me, Harley and the Stereo.

In the mean time, if you pull up to a car with Katy Perry blaring at 100, with a deranged woman singing to a man eating a plastic bottle, don't be afraid.... its just Harley and I cruising home.