Now that Glee is big and all that, I have a little confession to make.
When I was at high school, I was a theatre nerd. And I loved every second of it.
I have always loved words. Since I was a tiny kid. I loved to read, more than write.
I went to a production of The Wizard of Oz, in Ireland (where I was born) when I was 5 or 6. I sat in the squishy seats, in the dark, watching the people on stage, and I knew I was home. Never knew anything more clearly.
As I moved from kid through tween to very, very awkward teen (and across continents), I found writing. At school, at home, anywhere... I liked that I knew I could string words together. I liked that people saw I could string words together. I liked stringing them together as I watched the cool kids doing their cool stuff, suspecting that my ability potentially had a longer life than their coolness.
At a point in high school when the arse threatened to fall out of my world, I found youth theatre. Amazingly, it was full of nerds like me, who were inspired by the same stuff I was. They were like family. Thirty years on, I am really happy to say, they are still family.
As I ventured off on my own, after Drama School and a life in the theatre, I found other ways to write. I found press releases, and articles, and magazine editorial and (eventually), television, book writing and blogging. Writing is one of those lovely things that pays off in so many ways. Nerdy ways, for sure, but many ways, nonetheless. It makes you the go-to person on birthdays (heavy pressure over the need for a witty statement on someone's birthday card), and the rational editorial head at funerals and company retirements.
Still, deep down, I am a theatre nerd. I hate wasting my money on crap, but I love the moment when you realise you are about to be transformed. I love the commitment, the belief, the transcendence of real committed truthful artistic expression.
So, as I grew older, I was excited about the possibility of taking my future children to the theatre. I spent a solid ten years working in the hey day of theatre-for-young-people in Australia, thinking it would be cool when I could walk into a theatre with my own child. I hoped that we could share that moment of awareness, the time when you left the real world at the door, and milled about (carefully) engaging with people's dreams.
And then autism came knocking.
Not just traditional autism, but the sort of autism that makes you terrified of crowds. The sort of autism that puts you on the most volatile edge 24/7 wondering if someone, somewhere is going to make a noise you don't expect.
Definitely, not the sort of autism that feels comfortable in a dark room, full of hidden musical instruments and folk given to hoicking out juggling balls and screaming at each other.
I grieved with my inner theatre nerd, in the same way my rugby loving partner commiserated with his inner Wallaby fan. It sucked, in my head, that the one (legal) thing that lifted me out of the everyday and lit up my mind, was out of my son's reach.
But I sucked it up. After all, Billy is awesome. And Billy's brand of autism brought us animals (of all shapes and sizes, and presented in all media). Animals are excellent, and I love them too. Autism also brought us trains. Not so exciting to me, but hey... you win some, you lose some.
Autism also brought us massive amounts of kid's TV, that lifted Billy out of the social pressure eof the everyday and taught him a massive amount. From Hi-5, we got school skills and child-like playful relationships. From Charlie and Lola we got siblings and passionate histrionics. And from Little Einsteins, we got classical music.
Thankfully, Billy's version of autism also brought us passion. Real, driving love for whatever it was he was into at the time. If he heard the word Mozart, he wanted to find out everything he could about Mozart. He embraced that passion as he learned to spell, and he learned to read using Google and YouTube. He drove himself through the skills necessary to uncover whatever he could about what it was he was interested in.
At seven and three quarters, it drove him to the Sydney Symphony Orchestra, and their family concerts. It drove him to the Sydney Opera House, and the chance to sit with a group of other kids and take in the magic of the orchestra. In a theatre.
It drove him to the place I called home.
It's truly pathetic that I feel so happy about heading into the Opera House to see a show with my son. I see that... but I an happy. I love that he loves (for now, at least) something that I don't just love, I connect with... I learn from... I am inspired by.
Because when your child is diagnosed with autism, you are told to rationalise your dreams about who they are and might become. You are told to shorten your horizons and take them for what they are. You are told a lot of stuff.
Little Einsteins brought us the music. Daddy brought us the 'concert' idea. Life strung the rest together into a new experience.
Some days bite. Today didn't.
Next weekend might, when the screams of some random baby drive us out of the Concert Hall at the Sydney Opera House.
But, for now... no biting. Just smiling. And Mozart.
Thursday, July 28, 2011
Monday, July 25, 2011
Do you ever get this one...?
You may have gathered I'm generally not backward in coming forward, most of the time.
In context, where it seems something needs to be said, I am the one who will probably choose to open my mouth and say it. It's not my most socially attractive attribute, but it remains something of which I am relatively proud.
I try to use my power for good, not evil. I am incapable of genuinely following through with a desire (which I often feel) to actually, consciously hurt someone with my words or actions. I still do manage to hurt people, though nowhere near as often as the frenetic voice that surfs the emotional waves in the confines of my skull, goads me to.
Having said all of that, there are times when I an genuinely, absolutely lost for words.
These are the times when people challenge my understandings with bizarre, unfocussed, unhelpful half facts.
It goes something like this.
Me: Billy has shocking bouts of vomiting and we have no idea why.
Someone: That doctor of yours is an idiot.
Me: Wow. Really?
Someone: A good doctor would know why immediately.
I start to launch into the complex, detailed backstory about who we've seen, and what they've said, and who they've referred us to, and what medicine he's on, and what tests are coming next and how much we've read on the matter, and how we plan to build our own enzyme making machine... OK, I lied about the last bit, but you get where I'm coming from.
In some parallel universe, perhaps one broadcast on daytime TV, things are easily explained, understood and solved. Sometimes, I read about such places in books with suspiciously pastel cover art. But I am yet to live in such a place, and I am yet to be provided with a life scenario that is as easily solved as finding a 'good' doctor/teacher/therapist/hairdresser. I would go so far as to say, I dream of such a place.
Over the last year, which has been seriously Dickensian (as in 'the best of times and the worst of times'), life has spun out into something decidedly rich and strange. It feels like, on all levels, the world is a passive-aggressive battle between folk with generally good intentions and ugly closed minded individuals determined to be right.
Moreover, I have been forced to accept that I know nothing. Nada. Zip. I'm out, kind of nothing.
What's caused this empty frame of mind?
Billy's health, and the giant wooly monsters that jump up and bite us.
When he was three, on the urging of happy parents and therapists (professing miraculous changes on their kids and clients) we took Billy to a renowned homeopath. He began a detox program, not long after the meningococcal vaccine. Within a month, he was hospitalised with Transverse Myelitis. He has not fully recovered. Not many do.
This year we finally got some reliable guidance on what makes a child who eats relatively well and drinks litres of water a day constipated to the point of no return. It's a bigger picture disorder that could be nothing, could be nasty. We began a drug regime to get his system cleaned out, and Billy is now felled with waves of bile vomiting. This week, we test to see whether his bowel is twisted, next week we see whether his heart valves are up to the game, the week after it's his sphincter collection we challenge.
He's seven. Not seventy.
We've tried following the advice of the mainstream doctors, we've given the out-there herbally-burballys a go. We've tried the complementary medical people, the hospital residents, the suburban therapists and the child medical research centres. We've talked to a lot of people. And still...
We know nothing.
I have no defence, when the 'your doctor is a dick' people come at me. Maybe he/she is, I don't know.
I watch my kid struggle with everyday life, and while he's not bleeding from an artery, he's not exactly tap-dancing to show tunes either. I sit in doctor's offices and they say things like, 'It's rarely life threatening' and I think, 'For crying out loud, I'm a lapsed Catholic. I'm Irish. We invented catastrophising. Why the hell are you saying this so calmly to me?' I spend a lot of time wondering how other people react to some of the conversations I have been lucky enough to have... because I am seriously at a loss some days.
I know nothing.
Except this.
I know other families deal with terrible things, much worse than the worst case scenarios we are being presented. I take my hat (if I had one) off to those families, because the game of doctor polka is doing my head in. (Have I mentioned I'm not the most coordinated of folk?)
And this.
I also know that my son deserves better health. He deserves better information. He deserves a mother who can rustle up a better response than, 'I know you are, what am I?' when people hit me with their opinions on my life choices.
So, in the spirit of the yoga I have begun to improve Billy's (and my) health...
Please universe, find out more about why some autistic kids are so damn sick. Please find out more about why they can't control their poo. Please find out more about why bananas send them loco and grapes send them up the wall. Please find out who vaccines are safe for, and who vaccines are not safe for. Please test my kid, and give me some guidelines on how I can keep him functioning well. Please let me know how to keep the bile inside his gall bladder and not coming out of his mouth. Please give me evidence I can use, and please could a bunch of you agree before you chuck it out there?
And while you are at it, please stop questioning my credibility and the credibility of other autism parents. Disagree with respect and counterpoint. Ignore us if you are not interested, tune us out if you have no vested interest, listen to us if you do.
If you have the good fortune of having children who have not struggled, or who have been well treated in the system, enjoy that fortune. Use that fortune to shore up your chances of not ending up in the ICU, or the psych ward or worse.
I want to have cogent arguments. I want to have our journey planned out. I want to know where the hell we are headed.
I'm working on it. At the moment, all I've got is 'somewhere else'. Tahiti looks nice.
In context, where it seems something needs to be said, I am the one who will probably choose to open my mouth and say it. It's not my most socially attractive attribute, but it remains something of which I am relatively proud.
I try to use my power for good, not evil. I am incapable of genuinely following through with a desire (which I often feel) to actually, consciously hurt someone with my words or actions. I still do manage to hurt people, though nowhere near as often as the frenetic voice that surfs the emotional waves in the confines of my skull, goads me to.
Having said all of that, there are times when I an genuinely, absolutely lost for words.
These are the times when people challenge my understandings with bizarre, unfocussed, unhelpful half facts.
It goes something like this.
Me: Billy has shocking bouts of vomiting and we have no idea why.
Someone: That doctor of yours is an idiot.
Me: Wow. Really?
Someone: A good doctor would know why immediately.
I start to launch into the complex, detailed backstory about who we've seen, and what they've said, and who they've referred us to, and what medicine he's on, and what tests are coming next and how much we've read on the matter, and how we plan to build our own enzyme making machine... OK, I lied about the last bit, but you get where I'm coming from.
In some parallel universe, perhaps one broadcast on daytime TV, things are easily explained, understood and solved. Sometimes, I read about such places in books with suspiciously pastel cover art. But I am yet to live in such a place, and I am yet to be provided with a life scenario that is as easily solved as finding a 'good' doctor/teacher/therapist/hairdresser. I would go so far as to say, I dream of such a place.
Over the last year, which has been seriously Dickensian (as in 'the best of times and the worst of times'), life has spun out into something decidedly rich and strange. It feels like, on all levels, the world is a passive-aggressive battle between folk with generally good intentions and ugly closed minded individuals determined to be right.
Moreover, I have been forced to accept that I know nothing. Nada. Zip. I'm out, kind of nothing.
What's caused this empty frame of mind?
Billy's health, and the giant wooly monsters that jump up and bite us.
When he was three, on the urging of happy parents and therapists (professing miraculous changes on their kids and clients) we took Billy to a renowned homeopath. He began a detox program, not long after the meningococcal vaccine. Within a month, he was hospitalised with Transverse Myelitis. He has not fully recovered. Not many do.
This year we finally got some reliable guidance on what makes a child who eats relatively well and drinks litres of water a day constipated to the point of no return. It's a bigger picture disorder that could be nothing, could be nasty. We began a drug regime to get his system cleaned out, and Billy is now felled with waves of bile vomiting. This week, we test to see whether his bowel is twisted, next week we see whether his heart valves are up to the game, the week after it's his sphincter collection we challenge.
He's seven. Not seventy.
We've tried following the advice of the mainstream doctors, we've given the out-there herbally-burballys a go. We've tried the complementary medical people, the hospital residents, the suburban therapists and the child medical research centres. We've talked to a lot of people. And still...
We know nothing.
I have no defence, when the 'your doctor is a dick' people come at me. Maybe he/she is, I don't know.
I watch my kid struggle with everyday life, and while he's not bleeding from an artery, he's not exactly tap-dancing to show tunes either. I sit in doctor's offices and they say things like, 'It's rarely life threatening' and I think, 'For crying out loud, I'm a lapsed Catholic. I'm Irish. We invented catastrophising. Why the hell are you saying this so calmly to me?' I spend a lot of time wondering how other people react to some of the conversations I have been lucky enough to have... because I am seriously at a loss some days.
I know nothing.
Except this.
I know other families deal with terrible things, much worse than the worst case scenarios we are being presented. I take my hat (if I had one) off to those families, because the game of doctor polka is doing my head in. (Have I mentioned I'm not the most coordinated of folk?)
And this.
I also know that my son deserves better health. He deserves better information. He deserves a mother who can rustle up a better response than, 'I know you are, what am I?' when people hit me with their opinions on my life choices.
So, in the spirit of the yoga I have begun to improve Billy's (and my) health...
Please universe, find out more about why some autistic kids are so damn sick. Please find out more about why they can't control their poo. Please find out more about why bananas send them loco and grapes send them up the wall. Please find out who vaccines are safe for, and who vaccines are not safe for. Please test my kid, and give me some guidelines on how I can keep him functioning well. Please let me know how to keep the bile inside his gall bladder and not coming out of his mouth. Please give me evidence I can use, and please could a bunch of you agree before you chuck it out there?
And while you are at it, please stop questioning my credibility and the credibility of other autism parents. Disagree with respect and counterpoint. Ignore us if you are not interested, tune us out if you have no vested interest, listen to us if you do.
If you have the good fortune of having children who have not struggled, or who have been well treated in the system, enjoy that fortune. Use that fortune to shore up your chances of not ending up in the ICU, or the psych ward or worse.
I want to have cogent arguments. I want to have our journey planned out. I want to know where the hell we are headed.
I'm working on it. At the moment, all I've got is 'somewhere else'. Tahiti looks nice.
Wednesday, July 20, 2011
You know those Mummy instincts...?
If there's one thing most autism parents share, it's experiencing a gnawing feeling in your gut, telling you that something isn't quite right with your treasured beautiful child. Some of us felt it before birth, some of us felt it once schooling hit, some of us felt it somewhere in between.
For many of us, it was the point where we felt a whole new us growing. The growly warrior lion Mama version of ourselves started to take shape, as we hugged our tiny kids as if we could use their little bodies to squish the gnawing feeling away.
Then, we grabbed their little hands and we started the rounds of doctors and therapists and those odd experiences where you walked into someone's rooms and went, 'Oh man, this place sucks' and spent the whole time trying to plan a graceful exit.
In our family, we could see that the 'outside world', the place where we lived, loved and thrived, was massively stressful to Billy. As a foetus he covered his eyes and ears from the ultrasound. As a baby he cried when anyone raised their voices (no matter what their emotional state). As a pre-schooler he hid in the back of the room. As a primary school kid, he was sick more than not as he struggled to function in a noisy classroom.
No medical professional ever encouraged us to follow our instinct to protect him from the things that stressed him. In fact, they recommended the opposite. Despite their suggestions (which we were forced to try), we have fought, all his life, for the right to respect his need for calm, security and personal safety.
All parents have the lion tendency. I really believe that being a special needs parent, and especially an autism parent, brings out a whole new set of protective (sometimes angry, often innovative ) instincts. And this is why.
If we compared the dynamic body of information we have about expected child development to the actual concrete irrefutable knowledge we have about autism, we'd be comparing the Encyclopaedia Britannica with an Archie comic. By which I mean (should you be confused, as many are by my ravings) we do not know much about autism at all. And much of what we do 'know' is verging on the comical.
If one more person says to me, 'But haven't they proven vaccines and autism are unrelated' (insert any other nugget of autism related information if you wish), I will start random punching. Or I will scare that person by asking questions like, 'Who are they exactly?' and 'What do you mean by proven?' and 'Do you believe everything you read on Facebook, 'cos I'm fairly sure that the Dad who got the shock of his life or the vision of the baby being born that supposedly no-one can watch more than 25 seconds of, is actually 'true'. Then for a final conversational wrap up, I will invite them to prepare a dissertation on their favourite definition of the word 'truth'... while I walk away and make a stiff gin and tonic (I need to research how to stiffen gin, but I'm sure the truth is out there somewhere on the internet).
Every doctor we see has a different, and generally strident opinion on all things autism. It makes it rather fun when you take your child in for a consultation. In the six odd years we've been doing this, it is the exception (as opposed to the rule) that I've walked out of a doctor's office going, 'What an inspiration, that doctor really cares/knows something/changed my mind.' Generally speaking, the first rule of Doctor Club is 'Dismiss what parent is saying.' You don't need to be Brad Pitt to work out the second rule.
I go in with multiple questions, and I watch their eyes glaze over with fear, judgement or anger. I see them looking for my tin foil hat (Doctor says: what do you mean you don't use cleaning chemicals... what's your problem with nitrous oxide... fluoride is great stuff). I hear the tone of their voice shift when I ask that my son's blindingly obvious heath issues could use some sustained, ongoing attention (Doctor says: yeah, kids with autism often vomit for sensory stimulation... don't you know kids with autism get more gastro upsets than other kids cos they're always eating sticks and stuff... oh, yeah, he's withholding poo because he's learned you'll help him anyway). I watch their faces go red as they tell me to calm down, and accept that my hospitalised child is perfectly capable of sleeping alone in a shared ward without a parent there, with the TV turned off and with a pre-prepared hospital 'meal' for nourishment.
Some try, some fight, some use helpful vague phrases like, 'The interaction between the body, the brain and the environment is a complex one.'
And you know what? I'm OK with the vague phrases.
Because the way I see it (and experience it) in the world of autism we are struggling for any kind of absolute. We have some diagnostic criteria, a vast variety of behavioural and health manifestations and a bunch of theories. I reckon we are stretching it to call them theories. Maybe guidelines. Some things that work for some people. Helpful hints, that may be relevant to your child or not.
Big picture, we have splintered studies, funded and supported by niche sectors of health and education backing up the efficacy of one approach or another. We have people in the various camps of the autism community making their claims and slamming the other camps and their views. We have adults living with autism sharing the wisdom and courage of their lived experience, and parent warriors leading the information dissemination charge from their chosen standpoint. All laudable pursuits, and all different in philosophy, approach and recommendation.
We also have an ever growing series of autism industries building up around a variety of premises and promises - cure, recovery, change, social success, mainstreaming, detoxing, neuro-plasticity, focus, compliance etc etc, all of whom are oddly strident in their belief that this is the thing that will help your family. Most interesting, some genuine, all lucrative for someone.
And we have an ever growing generation of kids - people, with autism. All with parents by their sides who want nothing more than 'the best' for their kids. Except there's no consensus on the best. And if you scratch the surface of someone who claims to know the best, their stream of words runs out pretty quick - especially when you try to match what you know of your individual child to their recommendations.
So what do we do...?
We listen to our instincts. Remember those old chestnuts? The things that, way back when, helped us out of that uncomfortable squishy make-it-go away hug and toward the world of diagnosis.
This week, Billy was massively sick again. Vomiting green bile for 36 hours. His GI doctor says it it somehow related to his gut dysfunction and we need to start the process of having a look inside (contrast imaging and scopes - ahoy!) He says these episodes Billy is having (we've just finished the 4th in two months) are likely to be stress related and that we should consider keeping him as de-stressed as possible.
For six odd years (some way odder that others) we have said, 'The intense sensory assault of this world makes our kid sick.' This week, while Billy vomited bile, someone medical finally agreed with us.
It's not the be all and end all, but it might just be a start.
To the therapists who recommended hard core behavioural therapy to 'teach' Billy to be comfortable around other kids - bite me.
To the neurologist who suggested that our major children's hospital was not the Hilton Hotel when I asked for him to be removed from a room shared with babies - bite me.
To the teacher who chose to interpret Billy's absences from school as parental neglect and not a manifestation of stress induced illness - bite me.
And if you won't bite me, bite Dr Poo... hardly a pleasant sounding prospect.
We have a child who can't crap without drugs, who vomits bile after a visit to an indoor play centre, who needs medication to share an aeroplane with a baby... we didn't ask for it, we didn't make it happen and we don't want this to be the way it is forever. No matter what anyone else may choose to think.
We have to follow our instincts because that is all we have. We are not alone in this. Every day, in every way other autism parents are trying to put their kids first as well.
In the face of an education system that will allow an aspiring actress to access supported homeschool services but will not allow a child with autism to negotiate an ongoing flexible schooling arrangement. In the face of a health system that is adamant that their is no such thing as 'autistic pathology'. In the face of a government that deems families no longer need support in caring for their autistic children past seven years of age (and yes, I know we are lucky here in Australia to be able to access such support in the 'early years', it's just slightly inconvenient that autistic kids actually grow up).
Forgive my ranting, I am slightly sleep deprived (and bile stained). Just know that your instincts are likely very, very good and you will need your gin to be very, very stiff.
Whatever that means.
Thursday, July 14, 2011
A blog about a blog...
This week, the Australian Prime Minister released information about a proposed carbon tax. People got all fluffy and red-faced about what it could mean, and there was wall to wall coverage for a couple of days.
What has this got to do with autism you ask? Well...
One of the bits of coverage came from an (almost) astonishingly brilliant blogger called Heathen Scripture. It's a witty, insightful, ruthless piece of writing which I would invite you all to read, but I'm fairly sure than many of you will (as I did) baulk at the first paragraph. It's got a bunch of colourful language in it, in case you are one who is offended by traditional swears and curses. I warned you, OK?
This blogger, a brilliant mind in my opinion, leads me to a question... is it ever OK to make fun of people with disabilities?
And some other questions... like, is 'retard' a nice word or a nasty word? Is it fair to use a distasteful mental image to wittily prove a point, even if that mental image relies on stereotypes of vulnerable folk? Is colloquialism an excuse for offensiveness? Is offensiveness a word...?
It's a bit depressing to read the comments following the carbon tax post. Many of them tried to point out the potential offence (and laziness of using such an ugly image to make a witty point, many of them did not, some of them actually defended the use of the word 'retard' on the basis that it means other things apart from the one we in the world of special needs all hate. Many (probably the majority) chose to use the 'r' word themselves, to illustrate their point.
People I know, and have a lot of respect for, were not affronted in the least. And it really makes me pause and think (and feel a bit sick).
Perhaps I have lost my sense of humour completely. It's possible.There's plenty sucking the giggles out of the everyday around here. We work pretty hard at keeping things light and breezy, but looming court cases and visits to hospital and all that... these are not things that make me crack random smiles.
I just can't work out why it is funny/appropriate/necessary to evoke a distasteful image of people with disabilities to make a pejorative point. It seems like a cheap, nasty shot. I can understand that if your life has not been influenced in some way by disability that you might not care much... and maybe it's that perspective that makes me the saddest.
Today, I thought (and said on FB) 'What if we replaced the word retard with black person or lesbian or Chinese person? Would it be any more palatable to me to laugh at those folk while making a point about politics?'
No, it wouldn't. Not to me at least. Me, who may or may not have lost her ability to 'take a joke'.
It just isn't humorous to me at all to poke fun at vulnerable people, directly or indirectly. Nor is it helpful to associate images of vulnerable people with hopelessness, depravity or stupidity.
I don't think it's about my sense of humour. I think it's about my kid.
Billy is a legend. Don't get me wrong. But there are lots of things about him that can (and do) make people smirk.
Kids, who generally don't know any better, have been known to laugh at him as he chats away to himself, walks funny, struggles with motor tasks that others find dead easy. As his mother, I find it quite easy to initiate a conversation with said children about difference, acceptance, understanding and the fact that I don't have a problem standing on their little toes until their eyes water a bit. I've been known to death stare adults who give Billy pitying glances or those other looks that translate as 'Jeez, I'm glad that's not my kid.'
Because here's the thing.
Billy does not choose to be different to the average seven year old. He just is. He doesn't choose to have no control over his arms and face at inopportune moments. He just doesn't. He isn't trying to sound like Stephen Fry, it's just how he learned to talk.
It's not funny. It just is. He is not a joke. He just is.
I have nowhere near the writing talent of Heathen Scripture. I bow to his ability to both understand and commentate on current events in such a razor sharp and witty way. If I was his Mum, I'd be dead proud. Seriously, I think he's good. So good, that the last thing I would want is for him to be limited in what he can achieve.
I guess I just want the same thing for my child, special needs and all. And I'm guessing if I let people laugh at him because he looks/thinks/is different, I'm eroding his chances of success.
Or maybe I just need to teach him to 'take a joke', even if the joke is on him.
Now I feel really sick.
What has this got to do with autism you ask? Well...
One of the bits of coverage came from an (almost) astonishingly brilliant blogger called Heathen Scripture. It's a witty, insightful, ruthless piece of writing which I would invite you all to read, but I'm fairly sure than many of you will (as I did) baulk at the first paragraph. It's got a bunch of colourful language in it, in case you are one who is offended by traditional swears and curses. I warned you, OK?
This blogger, a brilliant mind in my opinion, leads me to a question... is it ever OK to make fun of people with disabilities?
And some other questions... like, is 'retard' a nice word or a nasty word? Is it fair to use a distasteful mental image to wittily prove a point, even if that mental image relies on stereotypes of vulnerable folk? Is colloquialism an excuse for offensiveness? Is offensiveness a word...?
It's a bit depressing to read the comments following the carbon tax post. Many of them tried to point out the potential offence (and laziness of using such an ugly image to make a witty point, many of them did not, some of them actually defended the use of the word 'retard' on the basis that it means other things apart from the one we in the world of special needs all hate. Many (probably the majority) chose to use the 'r' word themselves, to illustrate their point.
People I know, and have a lot of respect for, were not affronted in the least. And it really makes me pause and think (and feel a bit sick).
Perhaps I have lost my sense of humour completely. It's possible.There's plenty sucking the giggles out of the everyday around here. We work pretty hard at keeping things light and breezy, but looming court cases and visits to hospital and all that... these are not things that make me crack random smiles.
I just can't work out why it is funny/appropriate/necessary to evoke a distasteful image of people with disabilities to make a pejorative point. It seems like a cheap, nasty shot. I can understand that if your life has not been influenced in some way by disability that you might not care much... and maybe it's that perspective that makes me the saddest.
Today, I thought (and said on FB) 'What if we replaced the word retard with black person or lesbian or Chinese person? Would it be any more palatable to me to laugh at those folk while making a point about politics?'
No, it wouldn't. Not to me at least. Me, who may or may not have lost her ability to 'take a joke'.
It just isn't humorous to me at all to poke fun at vulnerable people, directly or indirectly. Nor is it helpful to associate images of vulnerable people with hopelessness, depravity or stupidity.
I don't think it's about my sense of humour. I think it's about my kid.
Billy is a legend. Don't get me wrong. But there are lots of things about him that can (and do) make people smirk.
Kids, who generally don't know any better, have been known to laugh at him as he chats away to himself, walks funny, struggles with motor tasks that others find dead easy. As his mother, I find it quite easy to initiate a conversation with said children about difference, acceptance, understanding and the fact that I don't have a problem standing on their little toes until their eyes water a bit. I've been known to death stare adults who give Billy pitying glances or those other looks that translate as 'Jeez, I'm glad that's not my kid.'
Because here's the thing.
Billy does not choose to be different to the average seven year old. He just is. He doesn't choose to have no control over his arms and face at inopportune moments. He just doesn't. He isn't trying to sound like Stephen Fry, it's just how he learned to talk.
It's not funny. It just is. He is not a joke. He just is.
I have nowhere near the writing talent of Heathen Scripture. I bow to his ability to both understand and commentate on current events in such a razor sharp and witty way. If I was his Mum, I'd be dead proud. Seriously, I think he's good. So good, that the last thing I would want is for him to be limited in what he can achieve.
I guess I just want the same thing for my child, special needs and all. And I'm guessing if I let people laugh at him because he looks/thinks/is different, I'm eroding his chances of success.
Or maybe I just need to teach him to 'take a joke', even if the joke is on him.
Now I feel really sick.
Thursday, July 7, 2011
At Hopeful Parents today
Doing my head in, waving my arms about...
Just a normal day at the office, really.
Click through if you are keen.
Just a normal day at the office, really.
Click through if you are keen.
Tuesday, July 5, 2011
Today, I love scripting...
Scripting, repeating, echolalia... whatever you want to call it. Today, I am very happy to be hearing it.
Billy is the king of scripters.
He scripts repetitively (the latest grab of children's TV that is stuck on a loop). At the moment it's the Numberjacks. The accents are quaint and English, if slightly shrieky... that Shape Japer wreaks quite a bit of havoc. I'm constantly on edge, thinking all the circle things are turning into squares.
He scripts in play (entire episodes of Thomas the Tank Engine, restaged and relived in the playroom, often videoed so then the video can be scripted, complete with giggles, dog barks and passing car noises).
He scripts events from our lives (this one's relatively new and slightly disconcerting as we have to be on our best behaviour now... the events leading up to Mummy telling the car's seat belt alarm to 'shaaadddduuupp' is the current favourite).
He recreates moments from TV shows and from life in actions (echopraxia), which is hilarious when we are out somewhere and suddenly there's a silent cheetah chase from Big Cat Diary going on. Not so hilarious for the elderly lady wearing her fox fur, mind you, but thankfully many cheetah chases end unsuccessfully.
He has now taken to re-creating movies (echo-speilberg-ia?). He finds clips on the internet similar to the ones he's seen already, assembles them into logical order, records the voice over (with the right accent, of course), adds screen supers and moves on to the next one. The best bit is his approximations of the background music, which are laid in to the voice over. To him, the logic of the aural world is in what is heard, not in the meaning of what is heard. He gets the meaning, but the recreation includes all sound, not just language. Many movies include grabs of conversations, phones ringing, hammering sounds from the construction next door and the odd dog bark. Billy's like a human Lyre Bird.
While he's not an obsessive details man (one of the autism trends he has shunned), he is an eye for detail man. He misses nothing, and works out creative ways to re-present those details in his movies, his language interactions, his cheetah stalkings and his play. Scruffy has been called on, many times, to play the part of 'unfortunate second impala to the left' or 'quarry wall'.
I read a lot about echolalia. I understand the theories. I get the logic. In my internet adventures, I see a lot of parents saying, 'How do I stop it?'
I may be proven wrong, or driven slowly mad by the Number Taker's song, but I would say do not stop it. I would say work with it, use it, enjoy it.
Billy's journey to functional language has been echolalia dependent. He learned to speak by mimicking the language that came to him with the least amount of social and sensory pressure. That language was on the TV. We saw this, and used it to his advantage.
We discovered Mary Beth Palo's Watch Me Learn DVDS - a learning system for autistic kids that maximises language and social skills. These worked like a faith healer on Billy. He saw kids doing things and he memorised everything - the words, the body actions, the facial expressions. He took that data and he moulded it for his own use.
We took our own video camera everywhere we went, and my sing-songy voice noted everything useful (and some non-useful things... he learned a lot about coffee in those years) in simple, declarative language. He learned from that and started commenting on his own world. As his language improved, so did ours on the videos. Bit by bit, the loop closed. Now, he teaches himself, making his own home movies, and reflecting on his own behaviours as he goes.
Sometimes, it's like Billy's rehearsing. He starts and stops, matching the facial expression with the verbal. He tries to get it to match the image he has in his head. Sometimes, it's like he's trying on a new identity for size. Sometimes, it's like pure restorative pleasure. He digs it.
We have a very open dialogue about scripting (now there's an oddly post-modern phrase). We figure deconstruction gives him (and us) tools for conversation, understanding and behaviour management. We talk about where different phrases have come from, we talk about changing up the words and expanding the language interactions, we talk A LOT about limits/appropriate times and places for scripting/who understands and who doesn't understand scripting (this issue of understanding equity comes up a lot around elderly family members who are constantly complimenting Billy's manners without realising that they've come courtesy of Charlie and Lola or Phineas and Ferb).
The NT adults in the house do not always love the scripting, for sure. There are only so many times you can hear 'It's the Problem Blob!' repeated in the key of C in the space of five minutes. On a side note, I try in my professional life as a kid's TV writer to avoid all high pitched utterances, just to reduce the amount of times I have to listen to sounds that could cut glass coming out of my son's mouth.
We do not love it, but we live it. We see its worth, and we value (more than almost anything) its function in Billy's life. It works with his skills and abilities, not against them. It helps him make choices and improve his language and social functioning. It reinforces his knowledge base, and therefore his security in this world. It highlights the astonishing gift that is a photographic memory, and opens doors to future learning strategies.
With maturity, age and our help, I'm confident Billy will learn to manage the social aspects of echolalia. I am assuming that he will not be 35 and repeating news stories to anyone who will listen. He may, however, be repeating them to himself in his own quiet moments. He may also be repeating them because his impeccable speech and gift for consistent vocal delivery has earned him a career as a newsreader or a voice over artist.
Echolalia, to us, is like a symbol of autism. It's one of the things that makes our kid stick out likes dog's balls in NT circles. At the same time, it is something that teaches him, extends him, calms him and gives him great pleasure. The same can be said of most children's educational toys, and I don't see any government warnings to mainstream parents on Fisher Price toys. Except for those odd mistakes with ambitious factory owners and cheap lead paint, but we won't talk about those any more, will we toy companies...
For the last three days, Billy's been in hospital, vomiting, wiped out. He's been on a drip, sad, sorry for himself and... quiet. No volume allowed on the TV. No toys. No scripting.
Today, I love scripting.
Later, when we go out, I'm hoping we don't see that old lady in the fox fur coat. I'm tired after two nights sleeping in a hospital chair and I'm not sure I have the energy to intervene. This could be the day the cheetah chase is successful.
Maybe you should watch the news, just in case.
Billy is the king of scripters.
He scripts repetitively (the latest grab of children's TV that is stuck on a loop). At the moment it's the Numberjacks. The accents are quaint and English, if slightly shrieky... that Shape Japer wreaks quite a bit of havoc. I'm constantly on edge, thinking all the circle things are turning into squares.
He scripts in play (entire episodes of Thomas the Tank Engine, restaged and relived in the playroom, often videoed so then the video can be scripted, complete with giggles, dog barks and passing car noises).
He scripts events from our lives (this one's relatively new and slightly disconcerting as we have to be on our best behaviour now... the events leading up to Mummy telling the car's seat belt alarm to 'shaaadddduuupp' is the current favourite).
He recreates moments from TV shows and from life in actions (echopraxia), which is hilarious when we are out somewhere and suddenly there's a silent cheetah chase from Big Cat Diary going on. Not so hilarious for the elderly lady wearing her fox fur, mind you, but thankfully many cheetah chases end unsuccessfully.
He has now taken to re-creating movies (echo-speilberg-ia?). He finds clips on the internet similar to the ones he's seen already, assembles them into logical order, records the voice over (with the right accent, of course), adds screen supers and moves on to the next one. The best bit is his approximations of the background music, which are laid in to the voice over. To him, the logic of the aural world is in what is heard, not in the meaning of what is heard. He gets the meaning, but the recreation includes all sound, not just language. Many movies include grabs of conversations, phones ringing, hammering sounds from the construction next door and the odd dog bark. Billy's like a human Lyre Bird.
While he's not an obsessive details man (one of the autism trends he has shunned), he is an eye for detail man. He misses nothing, and works out creative ways to re-present those details in his movies, his language interactions, his cheetah stalkings and his play. Scruffy has been called on, many times, to play the part of 'unfortunate second impala to the left' or 'quarry wall'.
I read a lot about echolalia. I understand the theories. I get the logic. In my internet adventures, I see a lot of parents saying, 'How do I stop it?'
I may be proven wrong, or driven slowly mad by the Number Taker's song, but I would say do not stop it. I would say work with it, use it, enjoy it.
Billy's journey to functional language has been echolalia dependent. He learned to speak by mimicking the language that came to him with the least amount of social and sensory pressure. That language was on the TV. We saw this, and used it to his advantage.
We discovered Mary Beth Palo's Watch Me Learn DVDS - a learning system for autistic kids that maximises language and social skills. These worked like a faith healer on Billy. He saw kids doing things and he memorised everything - the words, the body actions, the facial expressions. He took that data and he moulded it for his own use.
We took our own video camera everywhere we went, and my sing-songy voice noted everything useful (and some non-useful things... he learned a lot about coffee in those years) in simple, declarative language. He learned from that and started commenting on his own world. As his language improved, so did ours on the videos. Bit by bit, the loop closed. Now, he teaches himself, making his own home movies, and reflecting on his own behaviours as he goes.
Sometimes, it's like Billy's rehearsing. He starts and stops, matching the facial expression with the verbal. He tries to get it to match the image he has in his head. Sometimes, it's like he's trying on a new identity for size. Sometimes, it's like pure restorative pleasure. He digs it.
We have a very open dialogue about scripting (now there's an oddly post-modern phrase). We figure deconstruction gives him (and us) tools for conversation, understanding and behaviour management. We talk about where different phrases have come from, we talk about changing up the words and expanding the language interactions, we talk A LOT about limits/appropriate times and places for scripting/who understands and who doesn't understand scripting (this issue of understanding equity comes up a lot around elderly family members who are constantly complimenting Billy's manners without realising that they've come courtesy of Charlie and Lola or Phineas and Ferb).
The NT adults in the house do not always love the scripting, for sure. There are only so many times you can hear 'It's the Problem Blob!' repeated in the key of C in the space of five minutes. On a side note, I try in my professional life as a kid's TV writer to avoid all high pitched utterances, just to reduce the amount of times I have to listen to sounds that could cut glass coming out of my son's mouth.
We do not love it, but we live it. We see its worth, and we value (more than almost anything) its function in Billy's life. It works with his skills and abilities, not against them. It helps him make choices and improve his language and social functioning. It reinforces his knowledge base, and therefore his security in this world. It highlights the astonishing gift that is a photographic memory, and opens doors to future learning strategies.
With maturity, age and our help, I'm confident Billy will learn to manage the social aspects of echolalia. I am assuming that he will not be 35 and repeating news stories to anyone who will listen. He may, however, be repeating them to himself in his own quiet moments. He may also be repeating them because his impeccable speech and gift for consistent vocal delivery has earned him a career as a newsreader or a voice over artist.
Echolalia, to us, is like a symbol of autism. It's one of the things that makes our kid stick out likes dog's balls in NT circles. At the same time, it is something that teaches him, extends him, calms him and gives him great pleasure. The same can be said of most children's educational toys, and I don't see any government warnings to mainstream parents on Fisher Price toys. Except for those odd mistakes with ambitious factory owners and cheap lead paint, but we won't talk about those any more, will we toy companies...
For the last three days, Billy's been in hospital, vomiting, wiped out. He's been on a drip, sad, sorry for himself and... quiet. No volume allowed on the TV. No toys. No scripting.
Today, I love scripting.
Later, when we go out, I'm hoping we don't see that old lady in the fox fur coat. I'm tired after two nights sleeping in a hospital chair and I'm not sure I have the energy to intervene. This could be the day the cheetah chase is successful.
Maybe you should watch the news, just in case.
Subscribe to:
Posts (Atom)