i start this blog with a sincere thanks to the blessed lord
who has showered blessings and second chances on my foolish head
since i first got involved with this planet in 1954
*
i been spending a lot of time with scarlet kilbey since i been back
i marvel to see her grace and beauty and charm
she comes up with funny stuff
she figures out ways to manipulate every situation
she is sly and charming and obstinate and sometimes plain stupid
i try and do yoga
she comes out
demands my mat
does a whole load of hilarious faux yoga positions
and then when i try to get back into it
she sits behind me kissing n massaging my back
saying
does this feel good dad....?
2 things always amaze me
one is aeroplanes
the other is humans
when you think of all the tiny little things can go wrong
all those unseen unforeseen things
the valves
the links
the lines
the air
the water
the moving parts
the vision
the communication
the electrics
the bits n pieces
that no one person can understand
there is not one living person who can understand ALL the systems
and i look at scarlet kilbey
and god its a miracle
her little fingers n toes
shes bitten through her lip in a nasty fall
and miraculously
it all begins to heal up
her outrageous springy curls
her big dopey smile
and yet
and yet
i have to stop and remind myself
i have to take a pause and reflect on my good fortune
because nothing will ever break your heart like
something happening to your child
and then theres my nephew
man his behaviour pissed me off
until i finally could comprehend what aspergers was
and i guess i needed to be aware n educated
and even possibly
possibly i say
having a very very mild form of it myself
(this may explain somethings to you about me)
anyway
another very good friend i know has a totally autistic child
and this is quite another thing altogether
because the child is in some incommunicable place
like living in some kinda dream you cant get out of
isolated lonely forlorn
because all the bits n pieces are there
everything SHOULD work
but ....
but what...?
whats the reason......?
well no one really knows
everything can be a possible cause
all the usual stuff
that causes most of our problems
chemical n electromagnetic overload
vaccinations
pesticides
stress
genetic stuff
etc
theres been a steady increase in autism since 1980
or is that because the doctors started to diagnose more people
as with it
like having a child behind glass almost unreachable
no one can agree much on autism or what to do about it?
and all these people all on a sliding scale
from someone like my friends child
who is locked behind her autism like a wall
and i think of tommy singing see me feel me touch me heal me
and you imagine what it would be like if you can
and then theres the aspergers the famous ones like the guy in the vines
you can see the intensity with which one can focus his obsessions
you see australias rainman on rockwiz in the vid my brother made
this almost blind friendless aspergers guy
he has a knowledge of rock records second to none in this world
he slew em!
now some people say aspergers n autism aint a problem or syndrome
its just a way those people are
they say maybe its just to accept em like that
it aint a problem as such
but as you move further down that sliding scale
from aspergers to autism
it gets darker and murkier
and really
i think its true to say
that medical science and society in general
has not completely got a fix on this autism thing
n everything under its umbrella
to have an autistic child
to be an autistic child
would be hard graft
sobering
painstaking
and often unbelievably frustrating
we all need to know about it
we need to understand it a bit better
and our great medical minds have gotta suss it out
because
quite appropriately
we are all a bit in the dark
we gotta reach the people
thats why the church donated a little bit of its merch money
on the last u.s. tour
theres a lotta good causes n charities out there
i donate to greenpeace and the heart foundation
i donate to kids with cancer
and i donate my time to the vegetarian cause
i wanted to write a song about autism
but just like vegetarianism
somehow the gravity of the topic
derails my good intentions
so i wrote this here today
i am no expert
maybe there has been some recent breakthrough
i hope so...
but i know autism is a real heartbreaker
be very thankful if you are not afflicted or affected
we hope and, yes, pray
that some relief is on the way
sk cold dark winters day north bondi august 2009
Followers
36 comments:
I do admire what you do, you are a good man!
Opp’s I think was intended for the (w, anchorage... blog)
A conversation with myself about this video; the players, my voice, and my voice as a trippy kind of hipster dude.
the dude; kilbey!, man! That totally rocked!
me; well that was
the dude interrupts; I mean who could have thought you could rock soo hard! at home! like...
me; the song sounds good but
the dude interrupts; kilbey, I could totally feel the love in that, you were really channeling hendrix... man yes!
me; well I was saying that maybe it lacked in creativ.
the dude interrupts; what I’m say’n steeve, ohm, is, I could really smell the purple haze in that vibe you were hittin,, I wanna burn a big dubie with you bro!
me; okay but
the dude interrupts; shit! I spilled the bong!
as the dude mops up the bong water with an old pair of socks, that just happened to be near the couch...
I have decided that this video is alright; (as if what I think matters) but what will get Time Being TV, 100 responses, and endless views, is an acoustic version of some older songs... ‘other time’ or that one song off of the slow crack’ that I don’t know the name of, and have long lost my cassette of, but was much enjoyed.... I think the song goes something like ‘the oceans are drying...’ ...and of corse anything from Hayday...
Issues; I know that if you play the acoustic guitar an sing in front of your lap-top the acoustic guitar would/could over power the vocal... an that would be a delicate balance to at arrive with a good sound, you would need a vocal mic- and guitar mic... then into the computer... but you know all of this...(sorry for boring you) however, upon this thought, you could create a pay per view ‘spot light’ if you will of your songs, organically delivered form home.
so-long winded but well intended, and slightly drunk... yet ever honest, an not kissing your ass.
John
SK,
Nice words there. To this, I can relate... on a different level, yet on the same level.
My partner and I have a 5 y.o. son Will who has Athetoid Cerebral Palsy.
http://en.wikipedia.org/wiki/Cerebral_palsy
We feel incredibly blessed to have him, as the alternative was and is still painful to comprehend - basically, he was born due date, but birth was incredibly traumatic, and he was stillborn. Flatlined for close to 18 minutes (!), then some signs of life. Days/weeks in hosptial, first few days we said "goodbye" more than once, only to have him bounce back (talk about frayed!!!), slow progress, CP diagnosis after a few days, digest that. Finally home after a few weeks in hospital, yet outlook not rosy. Given a 5 year lifespan, with and i quote "poor quality of life".
First year he is in & out of hosp. His mum and dad on edge, dad can't quite take all this in. Mum the absolute backbone, unbelievable!
With each passing year, Will gets stronger and has def proved the experts wrong. Our attitude all along has been "let him show us what he is capable of". I would describe his condition as "medium level" for lack of a better term. He goes to a "normal" school. If I could describe him in laymans terms, he writes cheques his body cant cash :). His mind is as sharp as a tack, yet his body lets him down. can't walk unaided yet, can't talk yet (uses communication devices etc). Yet he won't die wondering...
Beyond all this, he is THE happiest kid and we don't know him or want him any different. He has a great 13 y.o brother and crazy 7 and 3 y.o sisters who love him to bits, and a mum who has been his absolute rock and is reason he is why he still with.
Its quite a trip to raise a child like Will. As i said, we see more positives. People have different reactions and I completely understand that. I'm not sure I'd get it if I wasn't dealing with this on a day to day basis. All i know is that Will makes me a better person every day, and I guess thats the point of this correspondance.
Anyway, as a father of 4 (and hobbyist musician), I admire and am inspired by the fact that you are able to fit music into yr life and do it so damin well.
Love your work,
Curt Emerton
thankyou for today's blog SK :) I remember reading a book in my early days of high school (many moons ago) about an autistic child and his story, but I cannot remember for the life of me what it was called. It did make a huge impression on me though and I have always had a fascination (if that's the right word) with this condition.
There's also a film coming soon to cinemas about a young guy with Asperger's (starring Aussie Rose Byrne) which I'm really looking forward to seeing :)
xxx
I've spent around 10 years reading medical literature and studies and have come to the startlingly obvious conclusion that many cases of autism are actually mercury poisoning if you look at the symptoms. Autism and mercury poisoning are both interchangeable in many cases -- it's just the terminology that is different.
If children receive all of the recommended vaccinations, they would receive, astoundingly, 2,370 times the "allowable safe limit" for mercury in the first two years of their lives.
I don't have enough time at the moment to delve into the details of this, but a very quick medical abstract that's easy to read on this subject can be found here:
http://www.vaccinationnews.com/DailyNews/July2001/AutismUniqueMercPoison.htm
april...my youngest, has narcolepsy AND cataplexy.
double-whammy eh?
ah-well...
we soldier on and make the best of what the lord has dealt us.
life ain't so bad...you just learn to be a little more tolerant, and excuse those who are not.
Good blog, SK. I've often wondered if I may have some kind of mild autism (if there is such a thing), since I've always had an overwhelming need to be on my own and live in my own little world, exploring my interests (primarily music, movies and native american culture & history) to a "nerdy" degree. I feel quite "different" in that respect. I constantly strive to be more sociable, but in all honesty I feel most comfortable inside myself.
I once read a book about food and health and I remember that there was a story about a little child with autism which was healed by dropping all milk products from their nutrition plan. If you google for "autism" and "milk" you'll find some information and stories about a possible link between milk and autism, for example http://www.autismweb.com/diet.htm
Maybe this information is no news for your friend and they have already tried it, but maybe they don't know about it.
I hear you. I am one afflicted by Aspergers, so I am glad you are talking about it.
dd
I have known quite a few people at that point along the spectrum. Always fascinating individuals with huge interests in one thing or another.
One loved the weather, and storms in particular. She was also blind. I used to read her chapters from a book about electrical storms and she'd positively squirm in delight at the stories and my description of the images. She lived with her family in a beautiful old castle not far from my own home. I hope she is still happy following Dundee United football team and still as fixated on Jason Donavon. LOL
Another person I knew played the accordian and sang Scottish songs as long as people would allow him. He gave free concerts to old people homes which went on for hours as they were always too polite to stop him. He was also blind come to think of it. He also wasn't that great at singing. LOL
Very intersting topic, Steve.
Brian
I'm a teacher and last year I had an autistic child and a child with aspergers in my class. Each day presented additional challenges for these kids and myself. The asperger child was incredibly bright, but he could not organize his thoughts to write a sentence without assistance. The other child had learning difficulties and chose to be mute for the most part. I never felt like I did enough for either of these children, but I learned to be content with the small victories. With constant home and school support - plus assistive computer software, I'm convinced these kids will go on to live full lives. Thanks for this post, Steve.
Yeah, autism is indeed a mystery. I look at my son and …well you know how you feel about your kids, you want to hug hold and love them, it’s so hard to imagine having a child which you cannot love in the usual ways. That was one of my greatest fears, that my child would have some sort of problem like autism, but thankfully he’s a totally normal (sometimes overly needy) child.
Scarlet is an angel, of course she’s going to manipulate ya. The lil’ Steven certainly never tried any of that on his folks did he ;-)
xoxo
I know the pain is usually felt more by the carer than the suffer at times because it's hard to understand why things are the way, but I just wanted to say well done to all those bods out there that love, care and look after autistic people. You are the salt of the earth.
Also, well done the church for donating some of the merch money. Think I'll head off there right now and top the pot back up a little. xx
hey steve -
i have serious asperger's, so thanks for saying the right things here. most people, when given an opportunity to talk about autism, have some crackpot theory as to its causes and then suggest it needs a "cure". you're right, it is a slippery, murky slope from asperger's to autism, but i know that if somebody "cured" me, they'd be taking away a lot of my personality, and that's just not good.
anyways, yes, thanks again for not being rash and loudmouthed...but i guess that's not your style these days anyway. :)
micah
Steve,
This one hit close to home... actually hit right in the middle of home. I think you know Asher, our 3 1/2 year old, has mild autism. I won't go into the details, but it's been everything you mentioned and more. The more you research, the more confusing it gets. It's the most frustrating thing ever. I'm to the point where I just don't want to talk about how or why anymore... I just go forward with what I can do to help him. I've been through all the emotions... worrying, crying, cursing God, cursing doctors, cursing polluters, and cursing myself (father's age could be a contributing factor). I've done it all. We're lucky because it is mild and most people are surprised when we tell them. Of course there are no guarantees, but everyone, (docs, teachers, etc) thinks he going to be fine and it's not going to be much of a problem in his life. He's constantly improving and is so, so bright. And he's extremely affectionate... those who aren't able to show affection must break the hearts of their parents. That would be hard to deal with. There are a couple of kids in his class like that, one beautiful Hawaiian boy with shoulder length black hair that spins in circles all day, never getting dizzy and never making eye contact. He breaks my heart every time I see him. Asher does have trouble telling us he loves us. We know he does, but there's some weird block there with those words. Every now and then he'll say it spontaneously, but most times it's prompted by us asking him. But he shows us with an abundance of hugs and kisses and his sweet disposition. I've accepted the autism and embraced it even... it's part of who he is but it doesn't define him. I'd be a liar if I said I don't still have hopes of it just somehow going away. Not very realistic I know, but he's the most important thing in my life and I can't help but dream. Thanks for supporting this cause. It never ceases to amaze me how all things Church related intersect with my life. If you Steve, or any of you fiends would like to see pix of my beautiful son, go here:
http://www.flickr.com/photos/40958083@N05/sets/72157621779314047/
Love to you and your family Steve,
Anthony
Oh, I forgot to mention there's a load of Church and other band pix on my Flickr page as well. Here are the two Church sets.
http://www.flickr.com/photos/40958083@N05/sets/72157621780272583/
http://www.flickr.com/photos/40958083@N05/sets/72157621903855774/
Anthony
We're flush with lots of slinky skills, us lot, but we haven't quite worked out how to play those sliding scales.
Schizophrenia is another one. Theories abound. Some folks come across all neuropharmacological, with electric needles and DSM 2.0 and the like, while others start holding your hands and singing about divine dolphin energy and pituitary portals.
Sliding scales.
I once heard this about mental illness and our efforts to define it: by definition, you don't have a mental illness until you present with a problem and are diagnosed as such. Foucault would have a few things to say about the power relations and societal norms etc., but the gist of that formulation for me is this:if it's not a problem, it's not a problem.
I'm a bit of libertarian that way. We've got to stop raining on each other's parades all the time.
I realise many who have never really experienced "mental illness" (however defined) may have a tendency to romanticise it a touch. Seers and sages and the divine fool. I can dig that as far as it goes. I'll watch that particular float go by without breaking out in storms.
Sure. But sometimes, further up those scales where the blue notes live and the weird harmonics start ringing out, up there it starts becoming a bit of a problem. Up there, at dizzying heights that switch into terrifying claustrophobic depths in the blink of an eye...up there...
...I don't want to fly too high, mamma, and don't let me drop too deep.
v
Its strange for years I have always been sure that you had dyslexia.I remember you saying that you got lost on a road that you've been down a thousand times, and that filling in forms drives you to total distraction. and I can't remember,thier was some other stuff that you said that seemed to make me think yeah he's dyslexic or ADD. I have dyslexia myself Yeats had it john Lennon had it, Churchill had it, Dylan Thomas had it Van gough, Picasso..the list goes on . I know the quirky Phonetic spelling that you use is deliberate but, I have a hunch that you have dyslexia I could be wrong.
excellent
Great post. Vegetarianism and autism. We must safeguard, respect and protect innocent children and animals. Bless The Beasts And The Children.
Steve
Heartfelt post,sir!
Horseboy is an excellent film/book that people may want to check out.
David and Micah if you drop me a line at empresarts@hotmail.com I will send you the two films we've made on Aspergers.
....nothing breaks your heart like something happening to your children....you damn well got that right, steve......
excellent blog....
love always.....
in my profession as a photographer who photographs schoolchilren, i have encountered quite a few of these special people. as a mother who has a, for lack of a better word, "normal" child, i cannot imagine the challenges that the parents of these children face every day. they are heroes.
thanks for supporting the autism cause.
lotza love....
I have huge admiration for all of the parents out there - keep loving!
Anthony - Asher is adorable! Thanks for sharing your photos!
Cee
Thanks mister for the performance.
(yesterday)
Havent seen you play for some time
so that will help
And the timeing is good
Just getting my fill of U23.
(down with the dispassionate)
Much love
Jen
SK09:
yep, yer right.
love the movies.
can't get the paypal donation to go through.
hope you didn't lose 30 percent off the top w/ the US Tour. please tell me that didn't happen.
Yer bored, get back on the road, don't you see why dylan keeps doing it? but put out the killer double record first. it's bursting inside.
keep on, man.
WIlfred Paradise
Steve - as a father of an autistic child (and someone lucky enough to see you this tour), thank you so much for your support of the cause and for raising awareness of the different realities for many among us. Autism is indeed a sliding scale and our child is considered "mild" or "high functioning", so we don't face the heartache other parents experience of not being able to communicate with their child.
And to your personal observation: the more you learn about autism, the more you realize that a lot folks (myself included) are affected; even if only just a touch.
Acceptance, patience and understanding are the first steps for the well being of those affected. Thank you for this post!
I don't know what I have but definitely could use tuning.
If I wrote a song about autism, it would go something like this:
I look at the sky and I am flying among the birds.
Sometimes, a faint noise from a distance
Inaudibly make out the sounds that make out my name
For a moment, I turn to the voice but I feel falling,
falling from the sky
I return my gaze and now I am in a spaceship
A transmission coming in on the monitor
Mirage of my mother's face
Her silent screams furrows her brows
I want to pull her in
to where I am
If she knew the fantastic voyage I am on,
would she break my heart so much?
I love this. Thanks, Steve.
As a trainer, I worked with autistic kids (all 11-17 year old boys). Challenging does not begin to describe the experience. God bless parents, doctors,friends, etc. who devote their lives to these children!
Thanks, Steve, for this heart-warming and heart-breaking blog post.
Signed,
rain-soaked Oregon visitor
When I was a teenager I would sometime accompany my mum when she would provide respite care a day or two a week at a group home for severely autistic children. These kids (there were four or five boys, all between eight and 13 years old) had all been given up by their families and been put in institutions before coming to this group home. If you look at a list of autism symptoms, these kids had virtually every one -- and at or close to the most severe level. They were completely in their own worlds, but it obviously wasn't as pleasant as "oh, he's off in his own world" usually seems. What struck me the most then, and has stuck with me to this day, was how incredibly frustrated they were at being almost completely unable to communicate those around them. Dealing with them, even in a very limited way, was both physically and emotionally exhausting, and it was obviously very draining for them too. Heartbreaking.
"theres been a steady increase in autism since 1980
or is that because the doctors started to diagnose more people
as with it"
The more people I know with aspergers and mild autism, the more I think much of the increase is due to increasing diagnoses. Throughout my life I've known people -- family members, friends, members of friends' families -- who were a bit different. Now I believe a good chunk of those people would be considered falling somewhere along the autism spectrum.
"i try and do yoga
she comes out
demands my mat
does a whole load of hilarious faux yoga positions"
That would make a pretty cool video clip!
well said Orpheus.
I good friend of mine has an autistic son. Not mildly, but severely autistic. I am amazed and humbled by how she and her husband have rearranged their lives for their son. They also have a perfectly healthy younger son who is beautiful. Lick of the draw I suppose.
Hope Scarlett's feeling better.
with love,
M
What has worked wonders with my child is completely removing dairy and gluten from the diet. Ties in nicely with the above about mercury, which can inactivate the enzymes in the body that deal with those foods. We see a fantastic NAET practitioner.One of the contributing factors with my child was the MMR shot, which reacted with vitamin c in his body. The NAET bloke reckons that all the kids he sees have arrived at it differently - makes sense -everyone's body chemistry is different - and that there are always a lot of different overlapping factors in the kids he sees. Another biggie is antibiotic use, throwing the gut flora out of whack.The dietary measures mean I have an incredibly calm, well behaved and happy child. That's not bad considering that he's bright but without speech and cannot read, write etc and you'd think the frustration levels would be through the roof - but they're not anymore. It's amazing the number of people who will say to me of the diet:"Oh, I tried that." But trying isn't trying for a week. You need to do it for all time and the benefit to the child - and the rest of the household - is incredible. The research is there to back it up nowadays and it's not difficult because there are so many alternatives to the above foods now. The kids are very often deficient in magnesium and B vitamins as well. The B thing probably ties in with why they have a problem with not being able to absorb fatty acids properly. A magnesium deficiency alone is enough to make someone's hearing very sensitive and make them have anxiety and sleeplessness. So supplements have been beneficial as well.
well put steve. my heart goes out to those parents and kids. i am so thankful.
tim fenn
I worry about the parents and carers, how they're coping.. true heroes!
Great topic. Im sure that song will come to you one day, i hope you write it.
Sue xxxxx
ps PP, hope Mark B is doing well! Will check out Horse Boy, Im quite interested in the audio version x
I saw you were doing this when I saw your show in New York. My Nephew has had Autism, more likely Aspergers like your nephew. Fortunately my brother had the money to get him good care, and he is doing better, but he is still a little off. I am fully aware of those whose issues are far worse.
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