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.
Harley
an Angelman
Monday, 30 May 2011
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.
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.
Monday, 23 May 2011
Welcome to second in line from the Angelman blog
This is the first blog in a hopeful succession of many to come. I have finally decided that I would like to share my story of living with a sibling that has the disability, Angelman Syndrome.
Angelman Syndrome is a rare condition, first discovered by Dr. Harry Angelman in 1965, that results in the abnormalities of chromosome 15 and is inherited from the mother’s side. Some characteristics include a love of water, proneness to seizures, an ever happy and laughing personality, jerky body movements and a lack of speech. But there will be plenty of time in the future blogs to delve into this more.
Through this blog I will share my experiences and that of my four brothers and sister. This blog is intended to be informative and educational with an entertaining element. It is not intended to make you feel terrible, guilty or sorry for myself or my brother, but it is going to make you think and hopefully inspire you to stand up for the rights of people with disabilities in Australia and the world.
I welcome you, your feedback and your interest.
thanks
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