New Scientist Article

I saw this link on Michelle Dawson’s Quick Topic Forum ( http://www.quicktopic.com/27/H/vJvhV4fDnBgw7 ) today:

http://www.newscientist.com/channel/health/mg19726414.300-vo ices-of-autism-silenced-by-charity.html

It’s so frustrating to see the first part of the article and not the rest!

I love New Scientist, it’s a habit forming read :) But I’ve been so busy this last year I’ve actually forgotten to buy it for several months in a row. This seemed like the perfect time to subscribe, I’m too anxious to wait till I can get myself to the news agent to buy a copy. So I subscribed hoping for that promised ‘instant access’. And. Nothing happened. No email. I can’t log on. I can’t read the article.

I won’t pretend to be a patient person, you probably already realise I’m not :)

It will show up tomorrow, I’m sure.

In the meantime I’m tempted to chew through my monitor screen, and I’ve hit ‘Send/Receive’ on my email about 100 times today. Heh.

Parody

I’m s’posed to be doing other stuff, but I’m so intrigued by this story– http://autisticbfh.blogspot.com/2008/01/autism-speaks-silenc es-autistic-child.html –that I can’t think of much else at the moment. Which is effecting my ability to work. It’s become like that song you can’t get out of your head; it’s bugging the heck out of me. I have SO many ideas for parody sites to take the place of the one strongarmed away by Autism Speaks I can hardly pick which one would be the most fun!

So in the interests of ‘getting this out of my head’, here are just a couple ideas for alternate parody sites:

AutismSpanks.org : A website devoted to handing out ’spanks’ for bad autism organisations and sites. Autism Speaks, of course, would get the maximum number, let’s say 5. No, 10. No…100. Heh.

Bad Autism Speaks! Behave yourself!

AutismSparks.org : A website devoted to offering cool ideas to make life easier and more livable for autistic people and promote positive helpful information from people, websites and real life organisations. The Autism Hub could be awarded 5 sparks, the maximum number of course :)

It’s kind of a nice idea, though not big on parody.

But there’s one idea that’s really fun to think about and is firmly stuck in my head. A site that would be a true parody.

FelinesSpeak.org

A site devoted to desperate cat owners who can’t manage to train their cats to act like dogs.

It’s really horrible, being a cat owner, you know. The world is set up for dogs. Everybody loves dogs! They’re so cute and affectionate! It’s obvious dogs are superior to cats, everyone in their right mind knows that. Why, did you know you can spend hundreds of thousands of dollars trying to get your cat to act like a dog and get absolutely no satisfaction for your trouble? It’s just awful. Cat owners have it so hard!

I envision a picture of a woebegone looking cat on the front page, and videos of cat owners trying to train their cats to bark, or take on tasks suitable for dogs. A picture of a fluffy Persian trying to herd sheep…a skinny sphinx kitty with a barrel under it’s chin, training to be a Saint Bernard. Advertisments for animal trainers (we can teach your cat to roll over and bark just as good as any dog! Before you know we can have your Siamese running with the neighborhood pack, baying at the moon and chasing the mailman like a good dog should!)

And of course, there would be awareness raising videos, of how horrible it is to have a cat. Why some cat owners are so miserable they even think their cats would be better off dead if they can’t manage to act like a dog!

Video close up of a long suffering cat owner–

“It was terrible! I went and looked at a school for cats, and there wasn’t a single dog there! I was so upset for the sake of my kitty that I wanted to throw it off the nearest bridge, but I didn’t because then the authorities might take away my dog. I wouldn’t want to do something so unfair to sweet little Fido!”

Long suffering cat owner wipes a little tear off cheek…

*sniff*

And of course there would be lots of links to charity work for the organisation, making money for ‘awareness raising’ campaigns and research. ‘Awareness raising’ to make sure everyone knows how horrible cats can be, and how hard it is to be a cat owner! And once everyone’s awareness is sufficiently raised, it will be easy to sell the idea of what a wonderful world this would be without cats at all! And ‘research’ because it be splendid if we could find a pill that instantly turns all cats into dogs! And failing that there’s always the possiblity of a prenatal feline test. All to give us hope for a future when…

not a single cat exists anywhere!

Ok, that’s enough. I think I can get back to work now LOL….

My Wittle Feelings Are Not Hurt

After not writing anything for a few months I decided to test the waters again the other day. I don’t generally like writing, in fact, I hate it worse than matching socks, my least favourite household chore. My husband must have 200 black socks (well, it SEEMS like that many when they’re all in the basket!) and they’re all the same size, but they’re all subtly DIFFERENT. I hate matching them like you can’t believe, it makes me so frustrated I could cry.

And sometimes I do.

I hate writing worse than that. Does this give you an idea of why I don’t do it?

:)

Ironic for a compulsive reader to hate writing that much, don’t you think? It’s every bit as joyful to me as…matching black socks.

Seems the only time I can get my lazy easily frustrated self to put fingers to keyboard is when there is something I feel so strongly about that I’m just gonna burst if I don’t say it. I’ve been feeling that way alot lately, so here I am again.

The reason I decided it’s time to add my voice to those more eloquent and better educated voices, is my anger over the recent ad campaign run by the NYU Child Study Center. Like many who have written about the ad campaign, I’m angry. In fact, I’m furious. It’s a nasty, hurtful, underhanded thing for someone to use scare tactics like that for any reason, but when it comes to all things AUTISM, I have to wonder when I see something like that: What’s in it for them?

Well, does anyone know? I’ve had a look at their website. Looks like they are running all sorts of schools and clinics, they have lists of doctors affiliated with them, they’re involved in research and they do talks and conventions and stuff.

I’m assuming this is a ‘for profit’ organisation, no?

It would be nice to have that out in the open at some point. I know they claim they’re doing this to ‘raise awareness’. Ain’t that sweet of them? So WHY are they so worried about raising awareness?

Could it be that ‘raising awareness’ for this organisation, like so many other autism organisations, has less to do with helping people and more to do with making more money by scaring the kadoodles out of people? And could it be that scaring lots of people will put more pressure towards getting goverment funding? Could it fill the seats in those classrooms, make sure there are lots of patients in their clinics, maybe add a couple of new wings to the center, and some outreach centers in new areas? Could it be that getting their name out there as much as possible will add dollars to the research coffers and get more willing subjects for research?

Well…could it? I’m just asking.

Because I’d like to know what price our dignity is buying these days. I’d like to know. Wouldn’t you like to know too?

The responses I’ve seen from the center and it’s administration have only added to my frustration. I read tonight about this latest quote on a post at Autism Vox, http://www.autismvox.com/provocative-harsh-upsetting-the-ran som-notes-ad-campaign/ , quoted from a NY Times article listed at her blog ( do read there, she’s so much better spoken than I am ;) )

Quote from the NY Times article, by Dr. Harold S. Koplewicz, the founder and director of the NYU Child Study Center:

“Everyone who participated felt the ads were informative,” he said. “While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.

“I am disappointed. I thought the people we’d be arguing with are the people who believe psychiatric illness doesn’t exist” or those who believe children are being overmedicated, he said.

“I thought we’d be fighting ignorance. I didn’t think we’d be fighting adult patients or the parents of patients whose feelings have been hurt.”

They PURPOSELY made the ads to be harsh and upsetting, and yet they’re surprised that people’s “feelings have been hurt”?!? How stupid does this man think we are? Stupid enough that we’re not ‘people’, obviously, in his mind we’re ‘patients’. Did you catch that bit? Here’s the quote again, just in case you didn’t, bold added:

” I didn’t think we’d be fighting adult patients or the parents of patients whose feelings have been hurt.”

And there you have it. I’ll bet my bottom dollar this is the real reason these ads are so harsh and upsetting. He’s not talking to people. He’s talking to potential patients or (especially) parents of patients.

Scare people badly enough, make them think they need you badly enough, and they’ll come running for your help I guess.

My feelings are not hurt, Dr. Koplewics, I’m ANGRY, and your patronising words and insincere explanations are not helping. My dignity and my son’s dignity are not commodities to use to line your pockets. You need to change your ads, and you MOST ESPECIALLY owe us all an apology.

There, I’m glad I got that off my chest, maybe I’ll go fold some socks. And probably have a good cry while I’m at it. I’m already frustrated, a few socks can’t make it much worse.

Howdy!

leaf-in-a-streamsmall.JPG
Howdy!

Howdy howdy howdy :D

It’s been almost a year since I wrote my last blog post, and boy have I been busy!

Busy busy busy :)

I’ve been keeping up to date with most of the other Hub bloggers, and thank you all for all the fantastic fodder for thought through the last year. There are some really nice new people on the Hub (I love Maisy and her mum’s homeschooling stuff! I just realised there are 4 homeschooling families on the Hub, that’s interesting…) And some dearly loved blogs are gone or in (perhaps? hopefully! temporary) hiatus. I hope all those we haven’t heard from lately are doing well. I worry when we don’t hear from bloggers who were once prolific writers, but then I know the break has done ME worlds of good, and hope it has had the same effect on them as well.

A lot has happened in the autism world and the Hub over this last year, and I’ve been like a leaf caught in the eddies at the edges of a stream…spinning in place and watching the world go by with great interest. I hope those who have joined me out of the mainstream are enjoying the peace to just sit and think on stuff, and those who have jumped into the rush won’t have too rough a ride!

So why am I writing now? Partly just to say howdy.

Howdy!

We’re still here, doing pretty well most of the time, and not so well some of the time, but then who said life is perfect? We get more than our share of joy, I guess, so we can handle the miserable bits.

And hey!

I want to say Merry Christmas to you all :)

My hands smell like lemon and orange peel, I’m making candied peel for the fruit cake we’re making tomorrow morning. We’re personalising it. Only cherries, homemade lemon and orange peel–none of that weird what-the-heck-is-that!? stuff. Lots of nuts; walnuts, brazil and pecans. And the best quality brown sugar I can afford (I think it’s called muscavado?) I don’t follow recipes, just like I don’t follow instructions well. So I read a lot of fruitcake recipes and concocted my own. I like doing that, it’s fun. I read recipe books front to back like novels, anyway, so it’s pretty easy for me to alter recipes. And I loathe following someone else’s directions to the letter, it’s annoying to me. If someone else already made it, what’s the point of my making it too? Sheesh. I like making things my own way.

Words to remember when my son doesn’t like taking instruction during homeschool :D I guess he learns best by doing things his own way, like his mum.

We’ve added art lessons to our school day. I don’t mean smearing paint around and playing with crayons, that’s a given. I mean learning human proportions, a bit of life drawing from a site that has sort of neutered (no privates showing) figures, sketching techniques, how to draw negative space…that sort of stuff. I have to keep the instruction part down to a minimum, show him something quickly and let him work it out his own way after that point. I figure a 30 second window for instruction to stay in the safe zone lol…Then I just give tips and ideas as we go. But not too much. It seems to work better than the traditional lecture type instruction, or too much critique which really gets his back up in a bad way.

Boy do I feel his pain. I have a hard time taking instruction as well…took a life drawing class recently and everytime the teacher tried to give me tips I’d fight the urge to tell her “I’m a better artist than you, dear, and what you just told me is stupid”. Not that it WAS stupid, necessarily, just that it irritated me no end to have someone tell me what to do, especially since I don’t like her art work. I mean, you can’t tell a teacher “Why would I want to do that? If I did, my work would look similar to yours and I don’t like yours!” I did follow her instructions. All spitting and cursing was internal, I promise.

I think I need to look for a teacher whose artwork I like before joining a class next time!

Luckily I’ve learned to keep all the curmudgeonly stuff surpressed. I wonder if our son will, it’s the one thing that seems to be causing him the most grief. We figure whatever is in his head comes straight out his mouth and no prettying up happens along the way–you get the uncut down and dirty version. I had the same problem as a kid, and to be honest it happens alot now too. It’s pretty distressing to realise you’ve hurt someone’s feelings when you had no intention to do so.

Hey, if you’re going to hurt someone’s feelings you should at least have intended to do it!

That was a joke :) Sorta…

Well, I’m done annoying you all. We’re still here, still kicking, and now you know it. I just wanted to write; I haven’t wanted to write for a long time!

Oh! almost forgot, I want to share a video, I love this band…

Go and take a step outside, see what’s shakin’ in the real world ;)

http://uk.youtube.com/watch?v=DL6VeE0Iyho

And as long as I’m plugging them, here’s my favourite of their songs:

http://uk.youtube.com/watch?v=v2FayS_AHcA&feature=related

I love the odd bits of percussive stuff that goes on in their music, it’s purty. I don’t dance (ew!) but this music makes me wish I did. See, I’m listening to this, and I can’t keep still!

Oh, and that painting…a leaf caught in the eddies :) Speedpainting, digital with graphics tablet about an hour. Just to let you know where we are!

Stuff

Photobucket - Video and Image Hosting
I painted this over the last couple of days: unusual for me that I also made a preliminary work in watercolour and ink, so for once I have a hard copy sitting at my elbow. Digital painting seems so natural to me, switching back to traditional work ends up tedious and annoying. And messy. I’m a bit of a klutz, I tend to knock my water dish over and drip ink on places I didn’t want it. It doesn’t help that I haven’t invested in good supplies: I used my son’s brushes, paint and some cheap watercolour paper, bleh.

While I was painting this I kept getting this feeling: hmm: this reminds me of something. It came to me while inking the original watercolour. The pose reminds me of Chuck Closes’ Big Self Portrait. I found myself breaking into laughter while I worked after that point, but I really couldn’t bring myself to paint a cigarette in this fellow’s mouth, and left it at that.

A large version of this can be seen at my DeviantArt account here: http://www.deviantart.com/deviation/46889786/

I feel this sorely needs a caption, if anyone can think of something that would fit I’d love to hear it.

I hope everyone is recovered from the holiday festivities. I enjoy the holidays but not all the HYPE. We keep things simple; it’s much more enjoyable that way. I was happy the boys finally saw my favourite Christmas movie this year. How funny, I can’t remember the name, but I bet if I say “Red Rider BB Gun” or “You’ll shoot your eye out!” you’ll know which one I’m talking about. I love that movie.

Luckily I managed to get all our closets and cupboards cleaned during the break, it’s a tradition for me to have that chore finished before New Years Day. I hate messy cupboards, but I hate cleaning them even more: it’s a good time to have them finished and ready to start afresh.

Another holiday tradition for us is eating hoppin’ john (not sure if that’s the correct spelling, but that’s how it’s pronounced) It’s a dish of black eye peas with ham served with a side of rice. Pretty simple. Where I grew up it was traditionally eaten on New Years day for good luck. Some years we’ve had so much bad luck, though, that my husband says maybe it’s having the opposite effect lol.

My step son is away visiting his mum, so youngest son and I have had lots of time to fill. I know he misses his brother, but we’ve also noticed that he’s been very calm and happy during this break. I think he’s enjoying the peace and quiet, and rests assured that his big bro will return soon.

We’ve spent a lot of time trekking around together, going to museums and other trips around town. The best part is discovering a new indoor pool complex with a really fantastic slide (the kind that’s like a big twisty tube). It’s so funny to watch him in the water; he enjoys it so much that he doesn’t seem to care about getting it in his eyes, his mouth, his ears. He hates that in the tub or shower, but in the pool he recklessly submerges himself, blows bubbles and comes up with water streaming from his open mouth and down over his wide open eyes with the biggest smile on his face.

Now for the hard part, the thing that’s had me ’stuck’ this last couple of months:

I still find it hard to read the stories about the treatment that’s come to be called the ‘Ashley treatment’. I dislike calling it that, like I dislike the name ‘Pillow Angels’. It reminds me of calling doses of medicine ‘my meds’ in an affectionate way, or cigarettes ‘ciggies’, like an pal-sy name will take the sting off reality. That’s probably grouchy of me, but at least it’s honest.

I guess it’s lucky that I don’t watch a great deal of television other than the news, and where I live this case has had only minimal coverage - otherwise I would have had a harder time pulling out of the rather deep depression I felt when I first heard of it.

With that in mind here are some thoughts (I realise some of these points have probably been flogged to death in the media where some of you live, so please excuse if this repeats opinions about the case you may have heard ad nauseum) :

1. If the parents trully gave this child the treatment in the hopes that making her an eternal child would avoid the problems of sexual mistreatment, they obviously have never heard of pedophiles.

2. I have read on several blogs that people are worried about ‘judging the parents’ and ‘walking a mile in their shoes’. But I think this case needs to be picked apart very carefully, the rights of our children are more important than avoiding talking about the issues for fear of hurting someone’s feelings. Judging the parents isn’t the point, asking if this procedure should be performed on other children IS.

3. Many people seem to disagree with the procedure, but excuse it because ‘it might be possible the family is in a position where it was beneficial’ or something along those lines. We excuse parents for things we would rail against if they were performed by a foster parent, a care home or a state run institution. At least at THIS point it would seem unthinkable to let anyone except a parent make a decision like this, and I think most people would be very hesitant to give rights like this to a foster parent (not to knock foster parents! I’ve known some excellent foster providers who were wonderful parents.) or other carer. If we wouldn’t like to see this procedure performed by foster parents on their charges, if we wouldn’t like to see it performed by the state or private institutions on their charges, how could it possibly be any different if it’s performed by a family on their child?

The parents will not live forever in any case, the child will eventually be in an institution of some sort, at which time the ’staying in the family home’ reason for it will be null. One of my worries about this case is that eventually there will be calls for similar procedures to be performed by persons and entities who may not have very much stake in the well being of the child (or adult): how can we deny it simply because the carer isn’t a parent? It would be discrimination to do so. If we don’t want to give this right to drastically alter the natural course of growth and development to other carers, we shouldn’t give it to parents.

4. I see little difference between this case and the past practice and general acceptance of lobotomy. If a child or adult is deemed to be too hard to handle in the home due to behavioural problems (or the possibility of problems), if the child or adult cannot receive care in the home from their parents but lobotomising the child/adult makes their behaviour more manageable and home care possible: how is that any different? I don’t think most people would agree that lobotomy is ethical. At least not now. But it was generally accepted by the public at one point. I would imagine there are still people living out there with the effects of what was ultimately deemed unacceptable practice. They have to deal with the ethical mistakes that were made in the past right up until this day. Which brings us to the next issue:

5. If this procedure is repeated and later found to be ethically unacceptable, there will be children whose lives have been irreversibly changed simply because no one put on the breaks and demanded this be discussed further before it is allowed. In any case, I find it very disturbing that an ethics committee, who I’m sure were professionals and honestly not monstrous villains, would ok a procedure like this. Somehow I find that the most unbelievable and upsetting part of this.

Its one thing to suggest something like this, completely different to look carefully through the issues and still give it the go ahead. I worry very much for our children and what this might mean in the future. *In my opinion* there is something more basic at stake here than rights to natural growth and development. There is something fundamentally wrong when a person’s rights are ignored to this extent, and I fear for what will come next if this becomes accepted practice.

I’m sorry I haven’t written for so long. I’ve been busy reading everyone else’s blogs, though. Seems like anything I have to say has already been said (better!) by someone else, so I can’t say I’ve felt particularly compelled to write recently. I’m honestly not much of a word person, anyway. Which is good, I love reading other people’s writing, and have lots of time for my real hobby - painting!

Posautively Fun

Well, here I am…as usual a day late and a dollar short :) But I don’t want to miss contributing something to PosAutive Day, so here we go!

I have my fingers crossed that I post these right, I’ve never posted anything from YouTube before…

I wanted to pick a couple of fun videos. I’ve enjoyed many of Christschool’s contributions to the PosAutive group, so picking something from him was a natural. I like this video in particular because it’s all stuff his son choose with lots of bright happy pics and includes a bouncy ABBA song, nice choice.

And I loved seeing his son take the same direction on a slide that my own son prefers. Up :) Down is so boring!

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

And this lovely film, with music that will give you goosebumps:

http://www.youtube.com/watch?v=h2FvprgL-UU

Aw, did you see the angel costume and the sassy pose? That’s dang cute :) What a great kid!

Now where’s my Ladysmithcd?!?

(Sorry, I wasn’t able to embed the videos :(And I’m too strapped for time to figure it out…but the links should get you there! I hope you enjoy them!)

Pillow Talk

Time: 11:30 pm

Place: My bedroom

My son says:

Sometimes when I can’t sleep it’s because of the hot stomach feeling, mum (and I crumble inside¦oh, my baby¦we don’t know if that’s related to the spikes that show up on his eeg’s, or if it’s something physically bothering him)¦and sometimes I can’t sleep because there are too many thoughts in my head and they won’t stop. That’s what’s happening right now.

The ‘too many thoughts’ thing happens to me, too, honey. I think it happens to everyone sometimes. Sometimes it happens when I’m stressed or worried about something, and sometimes it happens for no reason at all. Do you think it’s happening tonight because you’re stressed about something?

I don’t know, the thoughts just come out of nowhere. Sometimes I think about silly stuff, but sometimes I start to worry that when I’m a grown man I’m not going to be able to do things right and I’m going to have a hard life. Like I won’t know how to think good enough to do the things I need to. What if I don’t get a job, what if I end up in jail?

Oh, no! You’re not going to end up in jail! You’re a good person; you try harder than most people to do the right thing. You have a kind heart! Like the other day when you pulled the pillow out from under your brothers head, not realising he was using it. His head thumped down on the floor hard¦and he got mad and started punching you. When he got in trouble you explained that he didn’t realise you’d done it accidentally and that’s why he was so mad. Most little brothers wouldn’t have bothered to explain that, because your big brother did the wrong thing and needed to be in trouble. You tried to offer an explanation, even though he’d hurt you. Someone with a kind heart like that would never end up in jail, sweetie. You don’t lie, you don’t steal, you don’t hurt people¦you’re not the kind of person who does wrong things on purpose.

And inside, of course, I worry. He’s so easily made a scapegoat, he doesn’t know how to explain situations to explain his actions. He doesn’t yet understand why he SHOULD explain things. And he doesn’t understand how to deal with authority figures; a police man is just another person, so is a teacher, so it his mum. He talks to his doctor the same as he talks to his brother. Mum has this same difficulty, and knows why it’s a danger. We’re working on these things¦but I worry about them, too.

But what if I don’t know how to write and read good enough? I won’t be able to get a job. Then what do I do?

Baby, you’ve learned a LOT just this last few months. You want to know a secret? (It ain’t a secret here, I’ve talked about this on my blog before) When I was your age I wasn’t as good as YOU at those things, and you know you’re mum is smart, right? I don’t know why, but it was like there was a block in my mind about doing them, especially reading. Just before I went into third grade, over that summer, I learned to read again on my own.

Remember how I told you I could sight read in Kindie, but in first grade the teachers insisted on reading phonetically? Well, I lost the ability to read for a couple of years. I think because it was stressful that they were pushing a reading method that didn’t make sense to me, and it became too discouraging for me. I think that there came a time when my brain was just READY to read their way, and suddenly I could read again. I see the same thing with YOUR learning. When you’re ready to do something it comes easily– pushing it too early makes more roadblocks, and makes the process harder. I KNOW you’re going to have an easier time when you’re ready, because that’s what you’ve done before in learning other things.

Best not to worry about it in the meantime, we’ll take our time and learn a bit at a time. You’re already way ahead of where I was at your age, and I think it’s because we’re taking things in stride rather than pushing them too soon.

If we take things a step at a time, you’re going to learn everything you need to know, and have a very happy life.

His breathing slows and he snuggles under my chin. He hasn’t slept with me for months, he hasn’t had trouble sleeping until a couple of days ago.

Do you really think I’m smart?

I kiss his forehead.

You know the answer to that. You’re so smart it’s scary!

We both laugh.

He turns over¦breathes¦

breathes¦

breathes¦

Recognition

I had a very interesting, funny and enjoyable experience yesterday :)

It was the first meeting of our social skills class, this time parents only. I’ve attended other classes through our local speech pathology group, so I’ve had the pleasure of getting to know some of the children and parents who attend fairly well, but there are always new people turning up or old people dropping out, so you never really know who is going to show up on the first day of a class.

There is one mum I know fairly well from past classes. She has 3 little boys, all under the age of 7, diagnosed on the spectrum. It’s been in the back of my mind for awhile that *mum* is also on the spectrum, and in such an OUT way that it was quite refreshing to watch her in action during our group sessions. She didn’t hold back, if she had something to say…well, she did. Sometimes it was off topic a bit, but it was always fun, and usually made good sense if you stuck with what she was saying long enough. I really like her.

Well, today, when we started this new class, there were only 3 parents in attendence: me, a father I’ve met before, and a grandma (who I didn’t know) who was attending for her daughter who couldn’t attend. We listened to the presentation from the speech pathologists and answered questions about our children to get started, and then the SP’s walked us through a hand out that listed some difficulties for autistic children and suggestions to help them.

Grandma had already struck me as pretty savvy about her grandson from her description at the beginning of the class…but when the SP’s were talking about some of the methods they recommend to help the kids out with eye contact, she suddenly interjected “Well, I don’t know why everyone keeps harping on about that anyway! Why’s it so important to push eye contact on a person who can’t hear what you’re saying when they make it in the first place!” She explained that not only do her grandsons have autism diagnosis, but her son (who was in his 30’s) does as well, so she knew what she was talking about. Not only that, she said, but she herself had the same difficulty processing what was being said when she tried to maintain eye contact.

It was such a moment of recognition for me. Not only did I relate to what she was saying (and back her up with my own experience), but all the sudden I realised…this HAD to be the mum of the lady I’d met in the earlier class, the one with 3 autistic kids. Even though she didn’t look anything like her and there was nothing really specific to back it up– somehow I just knew. It was something in the way she spoke…something about her body language…and something about her attitude of “This is me, take it or leave it.” It was so familiar.

It’s hard to explain, but I suddenly felt SO happy. It was a bit like meeting a long lost friend, not just because I liked her attitude, not just because I was pleased to have guessed her identity (turned out I was right about it, I later learned). But because what she was saying was so close to how I feel, and it was just so cool to meet someone who had thought all these things through long ago. She had experienced these things her self, she had raised a son (and I think a daughter) who dealt with the same isses…and now her grandsons. It was all second nature to her, no big deal, and she didn’t want anyone ELSE to make it a big deal. It just wasn’t an issue for her anymore, she knew what she knew and she was perfectly comfortable SAYING it. Wow.

I tried to bite my tongue as much as possible through the rest of the class, but I’m a bit embarressed that she and I ended up taking up more than our fair share of time during the session. I just could hardly contain myself, I was so thrilled. We connected so well it was hard to hold back! I’m sure the SP’s were rolling their eyes over coffee afterwards, but HA! I don’t care :-)

After the class ended we spent almost an hour talking in the parking lot. It was just great. I had the same feeling from her that I get very rarely. That feeling of “I know you. I understand you. I am comfortable!”

Recognition :)

Ruminations

If you’re not in the mood for rambling, you might want to skip this post. Consider this fair warning :-)

I’ve decided to give up reading autism research stuff for awhile. The last few reports I’ve heard of autism research findings have left me sputtering in annoyance, and the only comments I can think to make would amount to non sequiturs. Am I the only one who finds this stuff fluffy nonsense? TV, low cholesterol and older dads cause autism. Yeah, sure it’s all those older dads who feed their kids health food and force them to watch Thomas the Tank that did it. Mmmhmm. There might actually be something worthwhile in all the nonsense (oops, I mean research findings), but I ain’t got a shovel big enough to dig it out of the poop.

So, putting autism research reading far aside, I read The Speed of Dark and Women from Another Planet this week instead.

After reading The Speed of Dark I decided I’m going to use as many contractions as possible in my writing from now on. I’m assuming (after reading the book) that it’s a cliché of some sort that autistic people are not (oops! aren’t!) capable of contracting their words. I dislike following clichés.

All complaining aside, it’s a pretty good book and I recommend reading it, though I didn’t care for the ending and disliked some of the generalisations, it’s a generally good read and raises some interesting issues. More than I can say for ‘autism news’ these days.

Women From Another Planet has some really good stuff, some of it very different from my own experience, but then the ladies who wrote here sound very different from EACH OTHER so I won’t let that bother me too much. Funny, there was one woman who spoke of using Shirley Temple movies to help her learn social skills as a kid. Me too.

I don’t recommend this!

The Shirley Temple School of Social Skills might have flown well in the 1930’s but nowdays, unh unh, no way.

So, yeah back to autism research and the funding of such.

I didn’t watch that comedy telethon thing that contributed proceeds to Autism Speaks, but I caught a really disgraceful performance from the show by the comedian Sacha Baron Cohen posted on Youtube. If you feel like raising your blood pressure a few notches, you can see it at http://www.youtube.com/watch?v=mWilcs0Fse4 .

If you’re not in the mood to watch the whole thing, that’s ok, here’s the part that pisses (yes I said PISSES) me off:

(The host asks if they have telethons in Borat’s home country)

Cohen, as Borat, responds:

Ah, yes, Jonny, we have one like this every years. Last year was for a very similar cause to this one. The money raised was used to construct the (Almahti?) Handicapped Care Centre. It have 300 cages for them to live in and public viewing gallery where for ten (tenga?) you can stare at the strange ones and for 20 you can throw potatoes at them.€

Whoa. Classy, eh? Thank you Borat and Autism Speaks, we really needed that.

Couldn’t they have raised their money without including jokes that insult disabled kids? Are these people totally clueless? And they say WE have poor judgement. Ha.

If Sascha Baron-Cohen is really the cuz of Simon Baron-Cohen (surely that’s just a rumour?!?) I do wish they’d have a nice long sit down talk at the next Baron-Cohen fambly picnic and discuss whether it’s ok to make offensive jokes about disabled children. I can’t imagine Simon B-C would approve of jokes like that.

Too bad. I liked Sascha B-C until now, just because he played the part of the lemur king so well in the cartoon
Madagascar.

I don’t like him anymore.

Oh, well, I don’t guess he’ll notice one less fan.

And to think. All that money that’s donated to Autism Speaks from that telethon and many, many other fund raisers is going to add lots more research findings for us to enjoy. I can hardly wait.

Which reminds me - I wonder if they ever found a nematode model of autism? NAAR (now Autism Speaks) was funding research into that a couple of years ago about the most pointless, demeaning thing I can imagine is finding (or creating) an autistic nematode. How the heck are you going to know if it’s autistic, I’d like to know? And even if you KNOW it’s an autistic nematode, what the heck does that have to do with me and my family, either in understanding us or helping us? Don’t answer that, I promise, it’s a rhetorical question

But couldn’t this money be spent in more useful ways?

Eh! Enough of my complaining. go have some quality time with your kids instead!

Exploring

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Oh, that’s right, I have a blog! I almost forgot.

We’ve been coasting along this last few weeks. There is paperwork to fill and home schooling to attend to. The usual creative endeavours of painting and cooking (in the last two weeks we’ve made homemade falafel, homemade sausages, sushi and steamed Chinese dumplings, biscotti among other less interesting things) and numerous art projects with the kids (currently working on a diorama of Japan). It’s pretty boring stuff to read about, though not so boring when you can get your hands dirty and dig in.

Probably the most interesting thing we’ve done lately was to take the boys to a local botanical garden for a picnic. We’ve been there so many times that we’re all comfortable with the area even though it’s quite large and can be confusing to the uninitiated. The one thing that impressed me the most about this visit was that I was able to tell the boys, after lunch, that they were allowed to explore from the boundaries of A to B to C and they knew exactly where I meant. Even better that I knew I could see them from my vantage point, even if there were brief times when it was only a flash of a red tee shirt shining through the bushes.

It’s interesting to find we’re now in the position that I’m seeking experiences for my youngest to roam further and further afield from me. There was a time when I wouldn’t have thought that would be possible, or even desirable. It feels I spent the first half of his life trying to get him to hold my hand and not run away into busy roads and old people tottering through the shops. There came a point, though, a couple of years ago when he was under considerable stress from a difficult school situation, that I started to notice he was clutching my hand like it was a life preserver everywhere we went. I don’t know if the stress he was dealing with was a factor in that, but it worried me no end at the time. It was when we resumed homeschooling last year that I started to realise I needed to work on building his confidence in himself, and start looking for ways to allow him more freedom to navigate by himself. It was a difficult leap for ME to make, especially considering the amount of worry and stress we had through those first 4 years but I think it is necessary.

In some ways this is harder for me than for him, I think. I have to remind myself often to stand back in many ways. It’s hard to get past those habits of jumping in to offer ‘assistance’.

Our experience of his finally learning to tie his shoes the day that mum wasn’t there to ‘help’ keeps coming to mind. I know in my heart that he needs space to explore and learn on his own and I can see that he is often accomplishing tasks with greater ease and pleasure when I allow him that. I remind myself often that he needs to find by himself the space between the words he writes and the people he passes as he walks through a crowd rather than having me steer him through.

I can relate my own experiences as a child to what I see him going through at the moment. The things I learned best were things I learned on my own. It’s true that I needed support and help, and so does he. But holding those laces in your own hand, and working out the steps to tie them in your own head without interference of ‘help’ is worth so much more than having someone else do it for you.

We made a poster for our wall. “Give a man a fish and you feed him for one day. Teach a man to fish and he’ll eat for life.” I know, it’s a quote that’s been done to death, but it’s apt for us at the moment.

So that’s where we are. He’s exploring, I’m trying to give the poor kid some distance.

I have my binoculars, though, heh.

Other news, I took out a DevArt account to keep my blog artwork in one gallery: http://mumisthinking.deviantart.com I like having it all in one place and I can play with the file size a bit more :-) Fun.