Yes we can

Well done Americans.

To an Australian watching from the other side of the Pacific Ocean, the thing that struck me most was the mindset attributed to Barack Obama.  Because he was an outsider, not a part of the culture of oppressed Afro-Americans, it didn’t occur to him that he could not make change happen.

And the same must go for us, families of children with disabilities.

We can make change happen.  Don’t even think about accepting 2nd rate treatment.  Fight openly for what we know our kids are entitled to.  We too are making change happen.

Yes we can.

my new home

I have a new home on the web. Please visit http://wheelyfast.powweb.com/

The link to my blog is at the bottom of the homepage.

the place where seizures take you

by ekie

Before I saw my first seizure, I worried about it.

What would it be like?  What would I do?  What if the kid stopped breathing?  To the uninitated, a seizure is terrifying.  The first time, it is.  The first seizure a kid has is frightening.  But the 2,000th?  Not so much.

 I got a job this summer spending a half day each week with “Molly”, age 9, and since taking it, I’ve learned to just glance at my watch to time the seizure, to stroke her arm, sing ‘The Itsy Bitsy Spider’, and wait it out.  I’m there for 4.5 hours, and in that time she usually has 6-10 seizures, lasting from a half second to – I think the longest was a bit over two minutes.  I can’t quite believe it, but I don’t worry about seizures anymore.  Molly, who functions at the level of an infant, may get a little sleepy afterwards, but that’s basically it.  If they go over 5-10 minutes, depending on their intensity, she gets special medicine, but so far I haven’t had to administer that.

So I sit, I sing, and I wonder.  Where does she go?  What is she seeing?  Her eyes roll, her arms jerk, her legs tremble.  I whisper in her ear, “Come back, come back.”  But she isn’t hearing me.  She isn’t hearing anything – not in this world, anyway.  But who knows what angels say to her when she takes off for the stars?  Who knows what strange messages her brain is trying to tell?  On a normal day, the only communication Molly makes is of most basic sort - laughter when she’s happy, tears when she’s not.  It was a little hard, at first, to even tell when she was out of her seizure, because it is not as if she’ll ever respond when I say something. 

But now I know the difference between a quick, light flit of the brain, a fairy tiptoeing across her neurons, and a deep blast, a resounding echo that goes deep inside her.  Sometimes she is sucked right down into the abyss, sometimes she stays closer to the surface.  All I can do is wait, wait for to come out of it, to emerge from her world and back into mine.

People who have had seizures can’t remember them.  Doctors say that they are like electrical storms in the brain.  A flock of geese, a murder of crows, a storm of seizures – that makes sense.  Yesterday’s storm of seizures (6 in under 5 minutes, ranging from 1/2 second to about 10 seconds long) was only unusual in that it came with rain – I was giving Molly a shower and suddenly her slippery little body was all over the place.    It is only today that I can realize the irony, that this is the first storm that has come with rain.  In the twisty humor of the disability world, this counts as funny. 

FYI: This is not just an Australian blog.  I’m an American, and for the record (’cause the time clock on this blog is not in accordance with my time at all) it is 7:35 at night, on Friday, and we’re about to enter fall, not spring.

The Avocado Advocate

I am green, I have no training and sometimes no clue… I am making it up as I go along. 

Clearly I missed the chapter on “How to Advocate for your Child” in  ‘What to Expect when you’re Expecting’, was there one?…

I devour information from PwD who speak, blog, write so eloquently about their needs/wants/dreams, but I am an abloid, how do I really know what MaccyMoo needs/wants/dreams.

I assume he wants independence, free will, ordinary experiences, laughter and ice cream for dessert.

I know he thinks sleeping (at any time of day or night) is for wimps and, should I choose to do his therapy, and mess with his ‘free will’, I do so at my peril.

He is five, he is a boy and he is my son.  I am significantly more than five, I am a girl and I am his Mum. 

How on earth do I really know what is in his heart.

I hope my ability to regularly exist in a ‘child state’, to consider what would have been important to me if I was a five year old boy and to strive to always appreciate a good ‘fart gag’ will stand me in good stead. Will that be enough?

We establish rules at pre-school to ensure he isn’t treated as a ‘precious, ‘special’ little boy’ but merely as a five year old boy – the kids get it, their parents might in time. 

But is that what he wants or what I want.

I find it hard to pinpoint what it is that I want for him.  Do I want him to be ordinary… and then… what is ordinary?  I consider my upbringing ‘ordinary’ but then I loved winning at sports (all of them), I liked being better at school than the person next to me, I liked that as a kid I was in the local paper regularly for my achievements.  Did everyone do this, is this ordinary?

I have struggled for sometime to work out what it is I am chasing for MaccyMoo – but finally…

I think I may have found it.

Thankfully there are people out there far smarter than me.  I came across an inclusive education site – important research as we prepare for MaccyMoo starting school next year and there it was…  the words I had been looking for…

“THROUGH THE SAME DOOR”

This absolutely encapsulates what I am trying to achieve for MaccyMoo – to be able to access life through the same door as everyone else.

It provides a simple answer when others ask “why are you mainstreaming him”, I now have an answer I am proud to share…

As I said, I am still green when it comes to advocacy, but I hope I am getting there. 

 

The site I found was www.throughthesamedoor.com it is Micah’s story of his inclusive college education and regular life.  Thank you Micah.

How many wheelchairs?

Confessions of a crappy protester

by ekie

For the record, I don’t think that I’d make a very good protester.

I don’t really like standing around all that much.  I can walk for miles quite easily, but standing tends to tire me out a lot, I don’t know why.  I also don’t like noise, for the simple reason that it is loud, and it hurts my ears.  From experience, I do not like the physical properties of large groups of people with disabilities, because between my clumsiness and their equipment, I get my feet run over, and that hurts my feet.  Also, some people who cannot speak use their horns to protest, which is great, except that said horns can be quite, quite loud and I jump about ten feet in the air every time one goes eeOH!  And when people start chanting I start covering my ears.  Not to mention all the body odors you get when a lot of people are crunched together yelling their heads off.

I also must admit that I haven’t been to the actual movies in at least five years, because 1, I’m cheap and 2, for a person who is sensory-defensive, the whole atmosphere of a movie can be overwhelming.  Also, what if I don’t like the movie?  I’d rather not spend the $10 when I can, instead, get movies I enjoy from the library for free to watch at home. 

All that being said, anybody in my area want to go and protest Tropic Thunder?  Because if there was one on my area, forget about my feet, forget about my ears.  This is about my soul.  Making fun of my people hurts my soul.  Yes – my people.  My people, your people.  People with disabilities.  The only minority group which anyone can join at any time and which, if you live long enough, you are almost certain to be a part of at some point in your life.

Somebody wrote into my local paper today saying that PWD’s just need to learn to laugh at themselves, to get a sense of humor.  I happen to have a fine sense of humor.  I can laugh at myself with the best of them, because if I didn’t learn to laugh I’d spend my whole life crying.  PWD’s have great senses of humor, especially dark, ironic, sarcastic humor, which is my favorite kind.  The difference is that when people laugh at the word retard, they are not laughing with us, they are laughing at us.  And who likes being laughed at?

The studio executives, I think, must have a brain that is as different from normal as mine is.  Because my brain, my heart and soul, ache and writhe in  actual pain at that word so much that I think a neuro-typical must also be in agony.  And if the executives aren’t, then they must be missing some crucial link in their brains, some bit that makes them human.  Some bit like compassion.  Some bit like love.

lesson learned

by ekie

I didn’t get the job.

I knew that I shouldn’t get my hopes up.  Yet despite that, I did.  I got my hopes up.  I honestly believed that the prayers of my mother, that the chanting of a woman I knew (she said her chanting had never failed) and that the whole positive-image thing would work, that I would get it, that I could do it.   But maybe the gods and goddesses could see right through me to my atheistic soul and decided to spite me, or maybe I made a mistake in the interviews, or maybe I just didn’t try hard enough, though I tried as best I could.  I went in for four interviews.  Four.  Got dressed up, in clothes that don’t belong anywhere in summer, drove the forty minutes in, parked, shook hands, smiled.  And they didn’t even bother to call me to say I didn’t get it.  They just said they’d get back to me by Friday if I got it, and it’s Monday now, and so, I didn’t.  Is it really so hard to just pick up the phone or shoot an email?  “Sorry, but………”

I guess it is. 

It’s been explained to me that I experience feelings differently from neuro-typical people.  NT’s have emotions in their heads.  I have them in my body.  I have a physical reaction to happiness, a physical reaction to sorrow.  Which is why I normally refuse to get my hopes up about anything until it actually happens – because disappointment can be so painful that it literally immobilizes me. 

Lesson learned: don’t get your hopes up.  Because when you float up, you will crash down, and crashing hurts.

In the meantime, I push on through the rain (why is it 60 degrees and raining in the middle of summer?) and contemplate making big signs that say KIKE and showing up at Ben Stiller’s premiere of Tropic Thunder.  People would get mad, and I would laugh and very patiently explain that it is funny, they just have to lighten up a little.  Jews are 1-3% of the US population.  People with disabilities are 20%.  Yet why is it that if we offended Jews we’d get arrested, charged with hate crimes, the FCC would never allow the word ‘kike’ in a movie without rating it R, yet the word ‘retard’ can be shouted out for all the world to hear and nobody cares? 

9:37 am.  My time.  Monday.  Apparently it’s already Tuesday in Australia.  Not here.

What do carers need? Don’t ask – you might be told

Is it just Australia that is unbelievably backward at coming to terms with people with disabilities and the family members who care for them?

Or do other countries assume you are not capable of identifying what can be done to improve the lives of family members with disabilities? As if your 24/7 experience doesn’t quite cut it in the search for evidence of what carers need?

The Australian Government and NGOs like to call us “carers” – most of us just refer to ourselves as mums, dads, grandparents, children etc.

Anyway, whatever they want to call us, the newish Australian Government has yet another Inquiry into carers underway. They were a bit shocked at the number of individual submissions they received (1600 + I’ve heard).

And now there is an online forum for those of us who want to take every opportunity to tell it like it is. It’s called Carers Virtual 2020.

Some of the comments on Carers 2020 are heart-rending in their eloquent description of what life is really like.

Other posts and comments have kept me giggling for a few days, although their analyses of what needs to happen are bitingly accurate.

And some aim to turn the whole disability/caring paradigm inside out and make it work by investing in people with disabilities and the families who support them.

You might be amazed to know that people caring for family members with disablity:

• Want control over their lives
• Are disgusted that they have to beg for equipment from charities
• Know how to help their adult children live fulfilling lives
• Need targeted supports relevant to life cycle changes
• Expect investment in their children with disabilties while young to maximise their opportunity for full social and economic participation in adult life

In short, this inquiry – like every other carer inquiry – spells it out plain and simple that “carers” want the service providers, academic researchers, brokers, advocates, government agencies and everyone else making a living from Australia’s burgeoning “disability industry” to stop. Listen. Learn. And act based on what “carers” and the people they care for tell them is needed.

Too easy.  But I wonder if anything will change?

How can I help my son get into trouble at school?

Yes you read that correctly.

Those of you who know us will wonder if there is anything else I can do to annoy the school further. Just asking them to obey the law and provide inclusion supports is proving too hard for too many.

The thing is, the cool boys get into trouble. That’s why they’re cool. Well, they are 13. So Mr S wants to be cool too. I guess he thinks he will be part of the gang that way. Makes sense to me.

So it’s my job – as helpful mama – to come up with some ideas for how he can get into enough trouble to get some cred, but not so much trouble he actually gets into trouble, if that makes sense.

Fortunately I’ve had plenty of experience getting into trouble with bureaucracies in the last 10 years. Something to do with not being able to be told what to do. Especially when my kid is treated differently, as if he is special or something.

So yesterday he wore jewellery to school. That worked quite well because he was told to remove it and of course couldn’t. The whole class noticed the fruitless struggle to lift both arms up to try to undo the neck chain. So it stayed dangling around his neck.

What bad thing can he do next week?

It can’t be obvious stuff like driving the wheelchair too fast because that really gets him into trouble. Although he has my approval for doing that when teachers are not looking and there is plenty of space.

It’s hard enough trying to live within (or gently bend) rules and not get into trouble, especially when the world is not inclusive.

But I’m amazed how much harder it is to try to get into trouble, albeit carefully and with credibility.

going on a bear hunt

by Ekie

There is a wonderful children’s song-game that I play with some of the kids I PCA for that goes something like this:

We’re going on a bear hunt.  We’re going to catch a big one.  I’m not scared!  Ooh, Grass.  Tall, wavy grass.  We can’t go over it, we can’t go under it, oh, no, we’ll have to go through it.  Swish-swash swish-swash swish swash.  Next verse: We’re going on a bear hunt, we’re going to catch a big one, I’m not scared!  Ooh, a river.  A deep, cold river.  Can’t go over it, can’t go under it, oh, no, we’ll have to go through it.  Paddle-paddle, paddle-paddle, paddle-paddle.

And so on and so forth, through the mud, the forest, a snowstorm, up a mountain, and into the cave, where we confront a bear. 

It occurs to me that this job search is a lot like going on a bear hunt.  I can’t go over it, I can’t go under it, I just have to go through it.  I’ve been going through it for nearly a year now, and sometimes, I’ve just about given up all hope of ever finding that old bear.  Until now.

You see, I’ve had not one, not two, but three interviews at a place that is so good, I can hardly stand to think about it.  I have made it into the cave, I am standing right next to the bear.  I find out this Friday, and my heart is so excited that it feels as if I’ve run through grass, swum a river, clumped through mud and navigated a tricky forest.  I don’t know if I’ve caught the bear.  I only know that I did my very, very best during the hunt, and that it will break my heart to have to start all over again.

In the game, when you finally reach the bear, the bear starts chasing you, and you have to go back through all the obstacles all over again, back home to your safe bed.  Once again, the metaphor is accurate.  Because if I do get the job, I will have a task before me that will make me want to turn tail and run home and never emerge.  Working a forty-plus hour week (when you take into account commuting, etc) will exhaust me beyond belief, and then I’ll complicate matters by trying to move out once I’m financially independent.  Because even if my heart isn’t ready to move on, grow up, be independent, my mind is.

Do parents ever think about the fact that, as they force their children towards independence each day, towards doing more and more on their own, that one day it will be their children forcing themselves?   Or that it would be just as painful?

I am standing in the cave with a bear.  Yet as terrifying as it is, I really, really, really want to catch him.