Shh...Mum is Thinking

Something From the Cupboard

2006-09-29T04:05:00.000-07:00

I’ve been a bit scarce lately. That’s partly due to the number of things I’ve been juggling. But ‘busy-ness’ isn’t the only reason. I’m having one of those overload periods I think, similar to when my son was going through his diagnosis. Back then I was staying up late every night reading books, papers, research, opinions…gorging myself on information till it felt like my head would burst and eventually none of it was making sense anymore.

Do you ever feel you’ve read so much stuff and have so many thoughts to sort through that your head is becoming the equivalent of the messiest cupboard in the house? Too much stuff in there, put in too quickly, shuffled through by searching fingers until nothing’s in the right place anymore. That’s how I feel lately.

One of the things I have bouncing around in my messy cupboard of a head has nothing to do with research papers, and perhaps isn’t even directly related to autism. It’s a story my husband repeated to me, something he heard last week from a workmate, and to me it seems very relevant.

Here it is:

Workmate, lets call him Fred, goes to a large science think-tank type place for a visit, for a reason not of any interest to this story. While there, he remembers there is a man working there who he very much admires. A scientist. A Great Man. Lets call him Barney :-)

Fred says to his escort…”Oh, please, would it be ok if I meet Barney? I’ve always wanted to meet him, it would be such an honour.”

The escort says “Sure…he works over there” and points at an office.

Fred walks over. Looks in the door. The office is empty. He returns to his escort disappointed. “Darn, I must have missed him. He’s not there.” Escort stops in his tracks….”Oh, yeah, he’s there.” he says, and leads Fred back to the office of the great man. Escort walks into the empty room and knocks on top of the great man’s desk…and Barney sticks his head out from underneath. They all greet each other. Fred was pretty happy to meet Barney :-) Smiles all around.

Turns out Barney ALWAYS spent the first hour of his day under his desk. Sucking his thumb. He has to because it was the only way he could ready himself to deal with the world. He wasn’t particularly embarrassed about it and his workmates weren’t worried or upset by his *gasp!* ‘inappropriate behaviour’. That was just Barney. He was a great man, and great men can have their quirks. It was part of the package. If you want Barney, you take him quirks and all.

I don’t know if Barney is autistic, though I suppose it’s a distinct possibility. But, see, that’s not whats important about the story, at least to me. He could be bipolar or schizophrenic or even neurotypical. I dunno, I don’t care. The fact is he was able to contribute something to the world simply because his ‘quirks’ were tolerated and accepted by his fellow human beings.

This story has been bouncing off the walls of my head the last week, ever since my hubby shared it with me. I was so happy when I heard it, so happy to hear the evidence that it IS possible for people to accept the quirks of others. Even, perhaps, with affection!

But the more I thought about it the more frustrated I felt.

After all, why do you have to be a Great Man for your quirks to be tolerated? There are probably heaps of people out there that would be able to contribute to society and have a shot at supporting themselves or could simply live a happier, healthier life if only we were more willing to allow each other a few quirks. Personally I’d be a lot happier to see more quirky people around, they make me feel comfy. I’d be very happy to have a quirky cashier wait on me, or see a quirky doctor, or a quirky garbage man or have a quirky neighbor or...

It's the social butterflies that make my heart sink, because I know they're not going to think too highly of my own quirks.

I’m moving my blog over to Lori’s excellent Autiblogs. She has purty themes…thank you again, Lori, for your kindness! I’ll publish this one last post on both Autiblogs and Blogger, and from this day forth, you’ll find me only at: http://mumisthinking.autiblogger.com/

Weary of Lack of Acceptance

2006-09-15T18:49:00.000-07:00

I started writing this as a comment to Soapbox Moms latest blog entry, http://soapboxmom.blogspot.com/2006/09/this-is-my-son.html and ended up tying in a few issues that have been weighing heavy on my mind lately. It grew to such monstrous length that I’m embarrassed to post it to her comments section, and hope she won't mind my publishing it here. It feels a bit embarressing to do this, but there are things I want to say here and some issues I think are important. So…here it is:

From someone who has to take an occasional break from blogging due to all the intensity...

To Soapbox Mom, I don't blame you for feeling frustrated and discouraged. It's hard to write about the things you love and care about most in the world knowing there are some people out there who will refuse to understand. The lack of respect and downright bile some parents show towards acceptance of autistic people can become disheartening. When you look in the face of your beloved child, it can also feel personal.

I find it especially hard to see autistic adults and parents who seek acceptance for their children ridiculed for speaking up about the things that really matter. They are brave to raise these important issues in the face of so much rabid opposition--and it's hard to see them slapped down time and again by militant biomed fanatics. When I see that it makes me feel a bit like watching someone ridicule my own son, because I know the issues important to autistic adults will one day be important to him. Seeing that can be very discouraging and more than a bit scary...I don't want to see him treated the way I've seen autistic adults treated recently. What makes the whole situation REALLY upsetting is that the very people who attack autistic adults and parents who speak out for acceptance on forums and blogs are also the parents of autistic children. They should KNOW BETTER for the sake of their own children, if for no other reason.

For my own sake (as an autistic adult) I don't care so much. I'm a crusty old gal and most of the time I can take it. But I don't want to see that sort of ridicule and dismissal in my SON'S future. And I especially don’t want to see that sort of treatment meted out by the very people who have the most reason to understand: parents of autistic children. I don’t care what their belief system is in terms of curing autism, they should show respect to all autistic people in the same proportion to the respect they would like given to their own children someday.

I cannot fathom why some people do not understand that very simple and basic point.

I also think it's unlikely that those very vocal biomed zealots are in the majority. There are probably more of us out there than there are of them. We are less visible simply because we are not fanatical.

For me personally, this is a long term labour of love, not a war campaign to be won in a quick short battle as it is for most fanatical biomed people. What I see with that crowd is the need to win as many people over to their side as quickly as possible to allay their own doubts about how they're handling their child's autism.

I think they know deep down in their hearts that the 'cures' of today will be one day be viewed in the same way as the ‘cures’ of yesterday...ineffective at best, abusive at worst. Theirs is a fanaticism of fear. What if they are wrong in their assumptions that autism is a horrible disease? What if the cures they espouse actually turn out to do more harm than good? Instead of contemplating those issues and thinking about the long term ramifications for their own children they turn to ‘faith’ in what they can not see and can not prove.

So there is a difference of tactics between us and them. I think we're in this for the long haul while they're in it for the quick victory. It’s frustrating and tiring to deal with people like that. So (to Soapbox Mom) yeah…I understand why you’d want a break.

But I do hope that as some point soon you'll return. There are many people who will be REALLY happy to see a new entry on your blog sometime in the future. Whenever you feel like writing...because even if you don't know we're here listening, we are.

And you ARE making a difference.

And to those parents of autistic children who think it’s great fun to disrespect autistic adults and parents who seek acceptance for ALL autistic people…look in the face of your own child, and remember this: those who fight for acceptance for autistics are paving the way towards a better future for your own child.

Mum Is Thinking

Taking the French Toast Cure

2006-09-08T06:41:00.000-07:00

Are you a person living without a soul, disconnected from the wonders of the social world around you? Do you find idle chit chat, fashion magazines and social machinations as interesting as watching paint dry on a rainy day?

Are you in fact suffering in the miserable abyss that is… (gasp!)… autism?

What you need is French toast.

No, really! I’m serious. Check this out:

http://www.docguide.com/news/content.
nsf/news/852571020057CCF6852571E2006F2657

In the interest of helping all those poor suffering autistic souls out there, I’ve decided to share a secret recipe I made up a couple of months ago. This should have you making eye contact like a used car salesman in no time flat:

Baked French Toast with Ricotta

8-10 slices good quality bread (not the kind you can roll into a dough ball, ok?)
9 eggs
1 ½ Cups full cream milk
½ C Cream
½ Kilo (1 lb) good quality full cream ricotta, drain in a sieve lined with a coffee filter beforehand if it has a lot of whey, it should be fairly dry
Sugar
Vanilla extract
Butter

Mix 1/3 C sugar, ½ tsp. vanilla and one egg into ricotta cheese.

Spread this mixture very generously (about 2 heaping Tbls) on half the bread slices (you can spread a thin layer of jam or conserve of choice on bread before hand if you like, I’d recommend seedless raspberry or blackberry jam, mmm) place remaining bread slices on top making sandwiches. Carefully cut each sandwich in thirds lengthwise, place edge up in a buttered deep dish casserole (about 12x10 or 13x9” size). If there is any ricotta mixture remaining when all the bread is in the pan, spoon it in between bread slices where ever you can stuff it.

Whisk the 8 remaining eggs with the milk and cream, 1/3 C sugar and one tsp vanilla extract. Pour evenly over bread slices, smoosh it down with the back of a fork so the bread soaks up all the egg-y cholesterol laden goodness. Dot generously with butter (about 2 Tbls total) cover with plastic wrap and refrigerate overnight.

Next morning preheat the oven to 350 F (about 180 C), bake French toast for about 50 minutes, till it is hugely puffed and crusty brown on top and a knife inserted into the middle comes out dry.

Serve with syrup and strawberries if no jam was used.

Serves 6 generously

Oh…ok!!! I know what you're thinking, and you're absolutely right! This recipe will definitely not turn you into a neurotypical fashionista talk show host type person. But at least it isn’t dangerous, like chelation or treatment with a portable hbot unit or lupron shots. It doesn’t cost a lot, like supplements, creams and potions. It isn’t goofy like having your electrical field adjusted or wearing funky crystals to change your aura. And it doesn't insult your intelligence, like the thousands of quacks out there with their thousands of theories and 'cures', all with their hand out looking for your money.

And...it tastes good.

But the best thing of all is that mum can make a nice brunch for the fambly on a weekend morning without having to do anything harder than turn on the oven.

Now THAT is useful.

Book Tag

2006-08-30T23:04:00.000-07:00

Thanks to both ABFH http://autisticbfh.blogspot.com/ and Taffy at http://prariehomeschool.homeschooljournal.net/ for tagging me :-D

One book that changed my life

By the Pricking of My Thumbs by Agatha Christie. This was the first adult book I ever read. I found the book in my grandmothers book case not long after I ‘relearned’ to read at about age 8, read the first few lines then hid behind the sofa to continue, thinking I wasn’t supposed to read grown up books. I remember my grandmother laughing at me when she found me; why did I think I wasn’t allowed to read it!? She encouraged me to finish it even though I was struggling with the new-to-me pictureless format and the grown up vocabulary. I already loved books at that age, but this was my initiation into reading ‘real’ books, the kind you read from cover to cover and it hooked me for life.

After all these years, I still feel this vague whisper of my grandmother whenever I read Christie's books. Grandma loved her writing, too.

One book that you've read more than once

If I love a book I will ALWAYS read it more than once. The book I’ve re-read most, though, is Jane Eyre closely followed by the LOTR books.

One book you'd want on a desert island

The complete works of Charles Dickens because I’ve missed reading so many of them.

One book that made you laugh

The Hitchhikers Guide to the Galaxy, all parts!

One book that made you cry

The Hundred Secret Senses by Amy Tan

One book you wish you had written

A Short History of Nearly Everything by Bill Bryson. I love that book. It’s the only science book I ever read that made me laugh out loud. Bryson is like the Mark Twain of non fiction writers--you’d have to be a gifted writer to make science that accessible and enjoyable to the general public.

One book you wish had never been written

That’s a toughie as I’m not big on censorship. I mean, if I could wipe out the genre of romance novels from my personal reality it wouldn’t hurt me any, but I wouldn’t deny them to others.

Other than that…

Should we delete Mein Kampf from existence? Would it have helped to do so? If so, I wish it hadn't been written.

One book you're currently reading

Saving Fish from Drowning by Amy Tan

One book you've been meaning to read

I started reading Shantaram by Gregory David Roberts a few months ago, had to put it aside about ¾ of the way through, then found I’d broken my connection to the book when I tried to pick up the thread. I want to go back and start from the beginning again, but it’s so big I’ve avoided it for the time being. It’s a great book, but at over 900 pages it seems like a huge commitment to start over!

Tag five other book lovers

Hm…I’ll try tagging Aspiebird, Autism Diva, Lisa/Jedi, Rose, and Andrea, but if any of you don’t have the time or inclination please don’t feel obligated!

Actually I’d love to see a list from anyone who’s interested--I enjoy reading these lists! So consider this an open invitation.

Things That Make Me Go Hmm...

2006-08-26T05:12:00.000-07:00

Shoelaces

My son learned to tie his shoes by himself about 1 ½ weeks ago. This was after our practicing together for a very long time, with me showing him over and over where the loop goes, pinch its bottom (giggle) and take the other lace around, under and through. My big hands were always in the way, my big head blocking his view, he unable to bring his foot up close enough to see properly…oh it was so frustrating for us both!

Then last week, older son was waiting outside to ride bikes, and mum was busy (Just a MINUTE! I called…a few times) He went quiet…older brother came in…and they both started cheering from the next room. Hurray! He’s done it!

He’s tied his shoes by himself at least once a day since, and he’s is so proud he learned at a younger age than I did. Good to have a chance to lord it over your mum. Indeed :-)

Now I wonder…maybe I should have been too busy to ‘help’ sooner. I think I was confusing him. Gah.

Maths

We sit together daily working our way through our maths book. He seems to find maths easy for the most part. But. There is something fishy going on…

Our math books follow the state guidelines for curriculum. They have a set way of teaching things. It seems the goal is to teach the simplest addition and subtraction problems by rote memory, then build on that to move upwards to using two and three digit numbers. Problem is, my son doesn’t seem to add and subtract that way, and strangest of all is that he is following the same path of thought with his maths that I did at his age. Say you’re adding 5 and 7…take 5 from the seven leaving 2, add the two 5’s quickly, put the ten in front of the two. I didn’t teach this to him, and in fact didn’t realise he was doing it until a couple of months ago, when I overheard him whispering to himself while working a problem.

It’s not so amazing that he does this as it amazes me that I did the same thing at his age.

Which wouldn’t be so strange if there were all there was to that...for example there's

Fon-icks

I was reading quite well in kindergarten. He was also reading at that age, not quite so well, but better than average.

Didn’t understand what the fuss was about when I was little. Neither did he.

But as soon as I went to first grade and the teachers insisted I read fone-et-ickly I lost the ability to read ANY thing, and didn’t regain the skill until 3rd grade.

My first grade teachers insisted I’d never known how to read, that I’d only learned to memorise a few Dr. Seuss books; my kindie teacher, parents and most importantly *I* knew different.

Phonics were my downfall.

They seem to be his as well. He hasn’t had the same dramatic loss of skills I experienced, perhaps because I’m not forcing him to SOUND OUT EVERY SINGLE WORD letter by letter as they did in my day and on failing phonetic reading he’s not being sent to remedial reading class after school as they did me (that was so humiliating after having been rewarded for reading in kindergarten).

But I know that he can read a word by sight quickly and easily, or struggle with it and more often than not fail to read it if I ask him to sound it out. We discuss and practice phonics but I don’t push it. Starfall.com has been a godsend in this area, it's a relatively pain free place to practice phonetic reading rules. Still, he relies most heavily on using beginning sound + context to help him work out new words, though I am seeing more use of chunking words into syllables, etc.

I wonder why we both had such similar strengths and weaknesses in this area.

Hm.

Monster Vegetarians

Son and I were discussing different classifications of animals the other day. He likes this sort of thing and the discussion was going into new areas as they so often do.

We were discussing herbivores, omnivores, carnivores when he asked “Mum, what would you call a plant?”

So we talked about why plants and animals were broken into two different classifications…that plants make their own food, but everything an animal eats comes from another living being, either plant or animal.

He sat and tapped his pursed lips…I love it when he does that. It’s a sign something good is coming soon.

“Mum, if plants could think would animals look like monsters to them?”

Hm. Good question.

Maybe a stalk of celery would view us as ravenous beasts, horrid in our need to consume the energy of other living things. What a thought! So we discussed how plants have come to rely on animals in many ways, and in fact many plants would die out if there were no animal life on earth. (Just don’t try to explain that to a tree that’s been chopped down, I think, but don’t say.)

It really was a fantastical conversation, the kind you sit and think about after the kids are snug in bed at night. Don’t get me wrong, sometimes home education can be frustrating, tiring or boring, but there are moments when it’s just magic.

Homeschooling tag

2006-08-24T06:10:00.000-07:00

Thanks to Sharon at http://thefamilyvoyage.blogspot.com/ for tagging me :-) Homeschooling...one of my favourite subjects!

1) ONE HOMESCHOOLING BOOK YOU HAVE ENJOYED

Homeschooling the Child With Asperger Syndrome: Real Help for Parents Anywhere and on Any Budget by Lise Pyles. I read this before we started working on kindergarten curriculum three years ago. I didn’t find it useful so much for curriculum information or ideas, but simply reading the variety of approaches to home education gave me a sense of confidence as we started. I think I needed that extra encouragement towards flexibility and adapting towards my son’s needs rather than following a set curriculum or school of thought, especially at the beginning. I was entering uncharted territory and needed to hear there was no ‘right’ or ‘wrong’ way to do this, only things that worked for us or didn’t.

2) ONE RESOURCE YOU WOULDN’T BE WITHOUT

I’m tempted to say food colouring simply because we seem to go through buckets of the stuff for science experiments, playdough and other crafts!
Honestly, there’s not one resource we rely on very heavily. We get more use out of practical household items than any specially bought materials. Things we use daily: calendar, table clock, buttons for counters, wall maps, measuring cups and jugs, measure tapes and rulers. Stuff everyone has lurking somewhere about the house, basically.

3) ONE RESOURCE YOU WISH YOU HAD NEVER BOUGHT

The set of flashy workbooks that are supposed to follow our state curriculum. Each page is brightly coloured and has lots of visual pizzazz, which is probably why my son hates them with a passion. We didn’t use them long and went back to the more humdrum books we’d used before. Same curriculum but easier on the eyes.

4) ONE RESOURCE YOU ENJOYED LAST YEAR

The books from enchantedlearning.com we printed out for our China studies were a huge hit with my son. He has such a passion for anything Chinese that he actually started reading and writing with more enthusiasm at that point. He loved trying to paint the Chinese characters for different words, too! We need to revisit Chinese studies sometime soon, methinks.

5) ONE RESOURCE YOU WILL BE USING NEXT YEAR

Our local swim centre for swimming and karate lessons.

6) ONE RESOURCE YOU WOULD LIKE TO BUY

A telescope.

7) ONE RESOURCE YOU WISH EXISTED

A place to download all the basic wall poster stuff. Like good maps of the continents with countries, pie charts, days of week, alphabet, months, counting in different languages, etc etc. You can find those things in different places if you look, or you can make your own but it would be nice to have them all in one place, easy to find, easy to print out.

8) ONE HOMESCHOOLING CATALOGUE YOU ENJOY READING

I must be hopelessly out of the loop LOL--I’ve never seen or heard of a homeschooling catalogue.

9) ONE HOMESCHOOLING WEBSITE YOU USE REGULARLY

We visit a LOT of different educational websites, I wouldn’t even know where to begin narrowing the list down to just one! So I’ll pass on the two resources I’ve found recently, in case someone else enjoys them as much as we have (these are both downloadable programs):

http://www.shatters.net/celestia/ My kids are in love with this program!

http://www.bbc.co.uk/sn/prehistoric_life/games/dinosaur_world/
The BBC site in general is a fantastic resource. PBS. ABC (Australian Broadcasting Corporation) And so many others. Oh my. SO many!

10) TAG FIVE OTHER HOMESCHOOLERS

Well, I don’t know who to tag! So I’ll just leave an open invitation to any homeschoolers out there, please, share with us! Leave a note in my comments section if you like…it’ll be fun!

By the way, I’ve turned on comments moderation for the time being. I hope ya’ll don’t mind…it’s just that I’m not too excited by the recent visit by ‘Mad Dog’ John Best JR--and after I posted my curbie kit, too (see my May 21, 2006 posting “No This Ain’t Your Playground”).

Some people just don’t get the hint, eh?

Guess we need more garlic.

"Red Hat and Purple Dress Time"

2006-08-11T20:13:00.000-07:00

“When a woman reaches a certain age, even if she is autistic, it becomes red hat and purple dress time and one forgets to mind every last one of one’s P’s and Q’s and be totally polite and vapid and ineffectual. I shall be Eccentric and noisy.”
--Patricia E. Clark, Autism Advocate

I love that quote..."I shall be eccentric and noisy".

After spending over 40 years struggling to fit in with the 'normals', and failing so spectacularly, it's nice to think I could just be myself--joyfully! myself at some point.

But as I was painting this, I kept thinking how nice it would have been to come to that point earlier in life. I'm shaking my head at all that wasted time, effort and emotion trying to be someone I'm not. If we were graded on our ability to achieve "NT-ness", I doubt I'd have gotten above a D- even on my so called best days.

Sigh.

And how about passing that legacy on to my children? That's an uncomfortable thought.

Why spend years struggling to push our little square peg into a round hole, shaving corners here and sanding pokey-out bits there, to end up with a not so perfect anymore square peg that STILL doesn't make it through that round hole. And feels he's less for it.

Eh!

Red hats and purple shirts for us all, says mum.

This is a Keeper

2006-08-06T05:30:00.000-07:00

I have found myself complaining lately: "Where are all the parents of older autistic children? Why don't we ever hear their opinions and experiences in the media?"

And then today on Michelle Dawson's Quicktopic board

http://www.quicktopic.com/27/H/vJvhV4fDnBgw7

I saw a link to this:

http://www.sltrib.com/opinion/ci_4141349

...and I thought. Yeah. THAT'S what I need to hear. That's a keeper.

People don't understand autism

People who are not fortunate enough to live with a child who is autistic have no way of knowing the exquisite reality we are exposed to daily.

Those same people do not have the opportunity to experience the limitless intelligence and inquisitiveness of autistic children. History is replete with examples of how ignorance and intolerance have resulted in some of the worst episodes of inhumanity toward others - reservations for Native Americans, relocation camps for Japanese-Americans in World War II, institutionalization of people with brain disorders. Society has become so complacent about such matters that it is regressing to a point where such reprehensible aspects of history are repeating themselves. We simply refuse to acknowledge it.

My husband and I have three autistic teenagers. Our oldest graduated on the honor roll and is an Eagle Scout. Our middle child is a nationally published poet. Our youngest spearheaded a project that resulted in more than 1,000 gifts being delivered to a children's hospital in a Third World country. In what way are they defective? Where are their diminished capacities?

Yet, not even the most basic of services - an education to which they are entitled - are provided without attempts to make the autistic so uncomfortable that these exceptional youth have to consider suppressing it, as if autism was something to be ashamed of. People don't understand autism, so they fear and vilify those with the disorder.

I am sure of one thing, however. Our children will have the opportunity to succeed and live independently as soon as others realize that autistic limitations are no different than any other person's unique situation. And parents like us are the ones entrusted with that duty. It is our job to inform and educate society. It is then their job to open their hearts and minds.

Rochelle Dolim
Sandy

Sometimes I feel so discouraged and worried at the attitudes we see towards autistics in the media and on the internet...worried that these negative stereotypes are going to haunt my son as he grows up and that they will make his life much harder than it should be.

When I read something like this letter I feel heartened that there ARE people out there who are trying to share their hard earned experience, to "inform and educate", and who understand the "exquisite reality we are exposed to daily".

I hope someone else out there will enjoy it as much as I do. :-)

You are Cordially NOT Invited

2006-08-03T00:07:00.000-07:00

Does anyone else out there feel extremely uncomfortable at news like this?

http://www.boston.com/ae/.boston.com/ae/celebrity/articles/
2006/08/01/island_party_funds_fight_against_autism/ (broken link)

Island party funds fight against autism

August 1, 2006

Nantucket nabobs feted NBC Universal bigshot Bob Wright and his wife, Suzanne, at the American Ireland Fund's cocktail party over the weekend. The power couple were commended for their ``Autism Speaks" initiative, a campaign they founded to find a cure for the undeclared epidemic. (The Wrights' 5-year-old grandson, Christian, is autistic.) ``Autism knocked on the wrong door," said Suzanne Wright. Not only did Deutsche Bank managing director Bart Grenier host Sunday's shindig at his Eel Point manse, but he ponied up $15,000 for the right not to address the assembled elite. Chaired by ``Meet the Press" moderator Tim Russert and his wife, ``Vanity Fair" correspondent Maureen Orth, the posh party was attended by NBC White House correspondent David Gregory and his wife, Fannie Mae executive VP Beth Wilkinson, ``Hardball" host Chris Matthews and his wife, DC news anchor Kathleen Matthews, former PBS poobah Pat Mitchell, actor John Shea, Irish ambassador to the United States Noel Fahey, Democratic consultant Bob Crowe, Fidelity Investments vice chair Bob Reynolds, Boston Capital CEO Jack Manning, ``Cheers" owner Tom Kershaw, and model Hollis Colby. The event raised more than $100,000.

And look, they raised $100,000 for Autism Speaks! Bless their little cocktail guzzling hearts, ain't that grand.

I wonder how much of that will go to actually do something helpful for autistic people, and how much will go into research to make sure we don't exist anymore.

Do you suppose there were any autistic people there?

Oh, yeah, that's right, it was a party to FIGHT AGAINST autism...I guess that means we're not invited.

I think my blood pressure is going up.

No News is Good News

2006-07-30T20:55:00.000-07:00

It’s been a longstanding tradition in my family that dinner time is news time. Our favourite news, one with a more global than local view, comes on at 6.30. This is such a long standing tradition that I don’t have to tell the kids to turn the news on when we’re ready for dinner; every night is the same. They help set the table with items I hand over the counter, fetch the cups and turn on the tv to the channel we watch.

Over time, we’ve adopted some unspoken ground rules to our dinner time/news time:

First, you’re not allowed to talk (about the news item you’re watching, anyway) until it concludes. You can ask someone to pass the salt, or please wipe the mashed potatoes off their forehead, but no questions or comments about a news item allowed until it is finished. Otherwise we might miss something important.

Secondly, we’re not allowed to give opinions. Well, you can say “That’s sad.” “That’s good!” “That’s interesting.” Otherwise it’s just facts, please. We adults save the knock-‘em-down drag-‘em-out (verbal!) debate stuff for after the kids bedtime. We don’t like the idea of indoctrinating children to our opinions; to us, it just seems better to give them facts and wait till they’re older to talk ‘opinions’ . When they’re old enough, they’ll have the right and obligation to form their own opinions, and we’ll hash things out then, I guess. In the meantime, this part of our dinner time tradition can be highly amusing when, for instance, my husband or I have to give the ‘other side’ of a debate we’ve had. Kinda funny to hear my husband give my opinion to the kids as though it has equal weight to his own. That works both ways of course, but it’s only funny when he does it ;-)

Our news is good to warn us about disturbing images coming up; Mum keeps the remote handy for a quick switch of channels. This is the third rule. Mum has the power of censorship. It’s the one time I get total control of the remote, and I glory in that power.

Click!

No more bad stuff.

I’m excercising that power completely now, in the same way I did after 9/11. My kids have become increasingly upset at some of the stories we've heard and pictures we've seen-- and not just the violent stuff. Families separated, running in fear, buildings bombed, children hurt and crying, parents weeping, old people displaced. The last news we watched had us all choking back tears, and I realised enough is enough, at least for now.

We'd best not feed the children grief along with their daily bread.

Please don’t think I’m taking sides on this issue. This isn’t even dinner table rules taking effect, it’s just that the issues are so complicated in the Middle East that I couldn’t begin to say who is right, who is wrong, what should be done to fix problems for which hundreds of diplomats and heads of state over scores of years have failed to find solutions.

I’m just sad. That things can’t be different, better, peaceful. Sad for the ordinary people who suffer and wish for peace, but cannot find it.

Sad for our children, who will unavoidably inherit this grief.

I’ll miss our news time together.

I Feel...

2006-07-21T22:02:00.000-07:00

Happy...

...because I made something for my youngest son this week that has him tickled pink and thrilled. And I've almost finished a painting that has frustrated me this last month...can't seem to get it just right, but it's allllmost there! Whew...

...because during our speech assessment last week, the therapist told me she is starting a social skills group and she thinks it would be a perfect fit for my son. I'm so hopeful this will be a good experience for my little guy, and maybe a way to meet some children (dare I hope for a close friend, even?) who are quirky and different...who are similar to him. We're lucky we live next to a park, so there are almost always a few neighborhood kids for him to socialise with everyday, but I'd really like him to meet more spectrumy kids. Will this make him feel less lonely, I wonder....less. Different? I hope so. I know I gravitated towards those type children when I was in school :-) It was just more comfortable. Ahh...the blessing of having quirky friends when you're a quirky kid...

...because I made paella for the first time this week. We researched it beforehand--the kids and I were thrilled with this little gem: http://www.vivaspanish.org/PaellaVideo.htm . They must have listened to the music 10 times in a row, and were giggling and singing "Hey! Hey! Hey!" I learned NOT to use paprika in the recipe, though, and not so happy about that. Ew. Made a note on the side of the printed out recipe...NO paprika. Gak.

...because my David Ford cd came in the mail :-D Bought it on the strength of this from NPR: http://www.npr.org/templates/story/story.php?storyId=5560603 I'm so out of the loop with popular music at the moment; I usually only listen to the news on the radio. I don't even know if this is something most people would have heard already. It definitely touched a deep nerve with me...he sings like a street corner prophet in this song, while the music gradually builds to an eye crossing cacophony, then ends with motes of dust settling. Doesn't sound like much of a recommendation lol, but I LOVE it. And geez, I love NPR, too. What a great place to find interesting bits of music, news, science information. Too cool...

Confused....

...about a friend of mine. Maybe it would be more appropriate to say she's a close acquaintance-- met through a one of my husbands work mates--our families have gotten together a few times, and I really like her and enjoy her company. Her husband called awhile back to tell us she was having surgery, and I knew her family was there to help out...so I waited a couple of weeks to call her and see how she's holding up. She sounded hurt I hadn't come around or called sooner, and I feel so bad. See, I thought it was best to give her time to recuperate first. That's what I would have wanted, I'm pretty sucky at putting on a happy face or chatting when I'm sick or recovering. I just feel sorry I misjudged how SHE would feel. I wonder if it would help to make her something really sinful (cheesecake? Baklava?) to show I really DO care. In fact, that's why I waited to call :-( I didn't want to bug her. argh...

Amused...

A couple of weeks ago the heavy wooden header over a sliding door that separates our living room from the kitchen area fell right off the wall when I closed the door. It had been a bit wobbly lately, I really should have gotten up there and tightened the screws sooner...just lucky it didn't hit one of the kids on the head. It hit my wrist as it came down, narrowly missed hitting my monitor on my computer desk, and smashed a pottery jar sending pencils, paperclips and pottery shards up in a cascade of debris. Now, I don't normally curse, out loud anyway :-) But it felt a bit like the world was ending for a few seconds and I let out a loud "Holy SHIT!" in my surprise. Husband and kids rushed up to help me set things right, and check my wrist. Afterwards, my youngest imp laughed at me..."Mum you said shhhhiiitttt....Holy shit, holy shit, holyshitholyshhhhitttt..." Oy. The next few days, he managed to inject the "sh" word into as many different phrases as possible, and when Dad finally put his foot down and said NO MORE...son said "Aw, but Dad, I've thought of so many uses for it!" I thought about it, and yep. He'd used it as a noun, a verb, an adjective, an adverb. We've been learning the parts of speech lately. Now, the question is, where can I find another word to teach him that's as useful as 'shit'?

Distressed...

...at the news of another murder of an autistic child. I don't know very much about this one, there is so much information about the father and nothing at all about the events surrounding the murder or the child himself. It's just so sad and depressing.

...at the news that ANOTHER big company, this time Kellogg’s, has bought into the Autism Speaks ridiculousness. Thanks to Autism Diva for alerting us http://autismdiva.blogspot.com/2006/07/snap-crackle-and-pop-are-just-trying.html . I'm going to write a letter, and no, I'm not going to buy Kellogg’s for awhile, just to soothe my own nerves on the subject. I'd like to know more about the group AD mentioned, the Autistic Social Action Committee--I hope they're calling for boycotting companies that support Autism Speaks and their ilk. I would feel so much better about all this lack of attention to the people they claim to support if there were some way to effectively protest. Seems the only place to really make an impact on people like that, is to get them in the pocket book.

And finally, I feel...

Hopeful...

...because there has been so much support for this petition http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php . I hope so much this will make a difference...I hope this will help stop the overwhelming tide of misinformation about autism. I hope for a better future for our children, where their strengths are acknowledged and nutured, and their difficulties given REAL attention and support, and the fairytale(cure with quack therapy)/horror story(autism as tragedy) stuff will end once and for all. If you haven't seen the petition, please read it. If you agree, please sign it. Lets give Autism Speaks a loud and clear message--if they want to speak for us, they need to speak for us ALL, and they need to speak the TRUTH.

Don't Tell Me What I Want, What I Really, Really Want

2006-07-16T07:15:00.000-07:00

Is it now necessary for me to say I’ve never, not for one second, either idly or in frustration, wanted to kill my child?

I never thought I’d have to make a statement like that, but just to inform those who listen to Autism Speaks, just in case they’re come away with the impression that parent of autistic child= longing to murder that child, I guess I’d better step right up and set the record straight.

Just in case.

I read this recent article http://www.alternet.org/wiretap/38631/ and the comments by “Autism Everyday” video producer Lauren Thierry with such a feeling of disgust and anger I actually felt nauseated. I was going to write to have my say about the ‘autism parent’/’dreaming of murder thing’, and the gall of this organisation that--on the one hand claims to speak for all of us, parents and autistics alike--and all the while drags us through the mud to further their own agenda. But I’m just sick of it, and there is no way I can say these things better (or more rationally) than those who have said them before me. Please read:

http://momnos.blogspot.com/2006/07/alternate-view-of-autism-every-day.html
http://www.kevinleitch.co.uk/wp/index.php?p=396
http://www.autismvox.com/karen-mccarron-alison-tepper-singer-and-misplaced-compassion/
http://ballastexistenz.autistics.org/?p=159
http://autisticbfh.blogspot.com/2006/07/sick-sick-sick-sick.html

But I have to say, concerning this statement in the article:

“The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. "I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools." It was only because of her other child, she said, that she didn't do it.

Both autistic and typical families have reacted with outrage and disgust to Singer's statement -- calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron.”

The point I want to make is this: yes, that statement made in the video was despicable. But I think that claiming that was the worst thing about the video is not at all correct. Bad enough that Tepper-Singer made that statement, but SO MUCH WORSE to repeatedly imply or even say outright it stands for us ALL. It is the overall disservice that video and Autism Speaks in general have done our community and the individuals in it that is MOST wrong, not simply that one statement.

Autism Speaks claims to speak for us ALL, and yet they consistently sell us short and imply we are less than we really are. Why? To illicit pity from sponsors, to galvanize support for their organisation and ultimately to add money to their coffers funding research that suits their own agenda.

They claim they know what we want.

Well, I think I know what THEY want.

And I think it’s time they stop selling us all short to get it.

Protest Against Prenatal Testing

2006-07-07T23:54:00.000-07:00

I'm sure over the past few years many of us have worried about the idea prenatal tests for autism, but for me at least, the concept seemed something that could only happen in the remote future...something to be concerned about, but hopefully would never come to fruition.

Well, the days of hoping this would never become fact, it seems, are coming to an end. There are already reports of prenatal tests for autism, and though they seem to be rather inaccurate at the moment, I'm sure it's only a matter of time before they're 'improved'. It looks like we're one step closer to the day when, as is stated with a look of longing by a mother on the "Autism Everyday" video, "I know that science is making great breakthroughs, and my hope is that by the time (her non-autistic child) is ready to have a baby we'll have a cure or we'll understand how to prevent autism."

A couple of years ago, my son and I travelled far from home to visit a medical specialist we don't have access to in our area. We spent a few days at a Ronald McDonald house while there (a really positive move, by the way--if you're ever in a similar situation, I highly recommend trying 'the house'), and while there we became acquainted with a young father and his son. The little boy, 6 at the time, had Downs syndrome, autism, and a heart condition. I was so impressed with this dad as we chatted about our kids. He was so obviously in love with his little boy, so matter of fact about his difficulties, and so very proud of his accomplishments. When I (panicky, overprotective mum that I am) saw his little boy was having a hard time getting down from the tall rocking horse that my own son couldn't dismount alone, I rushed over to give him a hand. The little boy put his hands out at me (Stop! I can do it myself!), pushed himself back over the rear of the horse, and slid down the back supports, wrapping his little feet monkey wise over the wood for grip.

I laughed to his dad--he's so independent! And look how well he communicated his intentions to me so clearly. The father, quietly proud, told me how he and his son often went out to climb rocks on a mountain close to their home; that his little boy loved climbing on things above anything else. And, yes, though mostly non-verbal, his son was learning sign well, and was able to combine that with his words to get most of his needs met easily. I was impressed with the down to earth attitude of this father, his willingness to accept his child’s differences, and look for strengths in areas others might have missed.

We talked for awhile, killing time while the children tore through the playroom toys and awaiting our appointments. What stands out in my mind about that conversation was the process of acceptance he went through in dealing with each of his son's difficulties--Downs syndrome, he said, was obvious at birth with his son, so it was fairly easy to come to terms with that. As he grew and autism became evident, that again, was difficult at first, but you learn about it, adjust and move on. The one thing, he said, with great emphasis, the ONE THING he found really hard to deal with was the heart condition. He said simply "We love him so much, we want to make sure he's with us as long as is humanly possible."

Just before it was time to go to our 'big appointment' with the specialist, I was feeding my son in the kitchen, and at the next table, this father sat and talked with another family. I zoned out most of the conversation, but at one point, I heard one of the women say to this father "There's a prenatal test for Downs syndrome now, did it miss your son's condition?" And the father answered "No, my wife didn't have it done." This caught my attention, and I glanced over in time to see the woman draw back...

"What? That's terrible, why didn't the doctor offer the test? Everyone has them done now! You could sue him for malpractice!"

And I groaned inside. She probably didn't realise how horrible that statement was, or where this was leading...and I felt my heart sinking, thinking how the father must be feeling.

"No, my wife and I discussed it before hand, and knew there was no point in having the test in the first place. If there were a positive result we would have had him anyway...and I'm not a bit sorry! He’s a beautiful kid." he said…amazingly calm and gentle.

Hearing the mother scramble to save face, I looked over to see if he was ok, or needed help…and he gave me the most beautiful, wry smile from across the room.

I wonder how often he'd had to field that particular question. Was this something he'd experienced so many times he had the answer down pat? Did he know how to put someone back in their place gently from experience? I don't know, we only had time for a brief goodbye, and when we came back from our appointment they had gone-- off to start a cross country tour with his wife and son, career on hold, with money saved for their adventure of a life time. I hope it was a beautiful vacation for them, and somehow, I'm sure it was. Some people are so down to earth they seem to just know how to treat life as an adventure, keeping their footing in most all circumstances.

So.

There will probably be a time in the not so distant future when we autism parents might very well be called to answer that same question this father did. The question that implies no one in their right mind would have an 'abnormal' child if there were a choice. The question that implies...your child, not 'typical', isn't wanted by society and shouldn't be here. There is a prevention, why didn’t you use it? If your child is born autistic, it must have been a mistake with the test, or the doctor messed up…you couldn’t possibly have chosen this!

This is a question I’m sure many parents of Down’s syndrome children have to live with, and the implications that come along with it. In a time when 80% of foetus’s tested positive for Downs are aborted, when there are increasingly few Downs individuals, and those that make it through that ethical dilemma to birth have to deal with the knowledge that most of their kind are now so devalued they are aborted without thought or concern--how hurtful this question must be.

It seems our scientific knowledge continually progresses too fast for our ethics to keep up. I wish there were more outcry against prenatal testing, not just in terms of testing for autism, but for other differences and disabilities as well. I'm sure most Downs syndrome people and their families would agree.

Different Like Me

2006-06-25T06:29:00.000-07:00

I bought a bookcase today, tra la la…no more books stacked on top of books and two rows deep on each shelf of my old book case, no sir. Not to mention the box stuffed full of books in the garage, the old stacking toy bin with all three shelves stacked high with educational books, the closets full childrens of books, my sons dresser piled high with books, the books under the coffee table, the books in the magazine rack in the hall, the books stacked next to my bed (and did I see a few under the bed as well? Hm…)

Crikey, I just realised I should’ve bought TWO new bookshelves. There’s no way they’ll all fit. Bummer.

Speaking of books, I recently bought one I’m very pleased with. It’s “Different Like Me: My Book of Autism Heroes”—I found this the day before Autistic Pride Day. It’s proved spot-on-perfect for my 7 year old son. It starts with an introduction by a boy (fictional? I dunno...) diagnosed with autism, and then short biographies of people like Einstein, Warhol, Hans Christen Anderson, Temple Grandin, etc.

I know many people are uncomfortable about ‘diagnosis after the fact’ of famous people, but this book seems to put less emphasis on these famous figures ‘having autism’, and more emphasis on their being ‘different’ in ways my son can relate to. So perhaps if you feel uncomfortable with calling Einstein autistic (I don’t, but whatever…) this book would still be useful simply because it shows that being DIFFERENT can be a useful and good thing.

We’ve working our way through the book during home schooling, reading a couple of biographies each day. When my son shows any interest in learning more we’ve searched the internet for additional information. So far we’ve searched for info on Warhol, Benjamin Banneker, Kandinsky and Alan Turing. I like that my son is relating to many of these people, seeing bits of himself in their struggles and strengths.

Warhol has been his favourite so far; he copied some examples of work during his free time, soup cans and such. Funny, he pointed out the Campbells soup at the grocery this week—“Look, mum, it’s Warhol’s soup.” The design and text are so different, I suppose it must have been the colour red and the name on the front that clued him in.

I find it amusing that Warhol started out as a newspaper and magazine illustrator, and early on was mainly known for his drawings of women’s shoes. :-)

Amazing what a parent will learn while home schooling. Hmm.

June 18th is Autistic Pride Day

2006-06-14T21:14:00.000-07:00

Autistic Pride Day is just a few days away on June 18th. Anyone interested in finding out more can check out this site http://www.aspiesforfreedom.org/autisticprideday/

I understand there are a few organised events in different parts of the world, but our family will be celebrating in much the same way we did last year: a simple picnic, weather permitting, casual conversation and a project to finish together. I like the idea of a low key family celebration; somehow it just seems fitting, and works so well for our little family.

Last year we talked with the children about some of the positive aspects of autism (original view point, ability to focus intensely on a project or interest, attention to detail and the ability to think independently from pressures of the ‘crowd’). The boys enjoyed learning about some of the famous people who are assumed or known to have autism and why it would have been a beneficial part of their lives and development. We also discussed some of the challenges these people often faced, and how it was useful to have the ability to stand strong in their beliefs and not be swayed by social pressures. Stubbornness isn’t always a bad thing ;-)

Our family had been through a particularly stressful period last year; it was at about this same point in the year that we made some major decisions and changes in our life. I think our APD celebration was in many ways part of the turning point for us—it gave us a chance to discuss with the children and between ourselves how we wanted to deal with different issues and reaffirmed our determination to raise our children with pride in their differences.

It was also a chance for us, as adults, to reassess how we deal with our own differences, and in some ways, I think this was the most important issue of all at that time. We started to discuss our own reactions to issues similar to what our child was dealing with and realised it would be impossible to raise a child to feel proud of traits that we are stressed about or ashamed of in ourselves. Learning to give ourselves a break when we need it, giving ourselves extra time to process information (“Hang on, son—shh—mum is thinking”) and looking for clarification when things around us aren’t making sense. Most importantly we’ve realised that we shouldn’t be so HARD ON OURSELVES, because it not only hurts us, but the children pick up on it, and eventually it will affect their own self image.

This year our APD celebration will be more relaxed and not so serious :-) We plan to spend time playing around with some of the different interests we have in our family. I think this will be fun, as we've all picked up a bit of interest in each others hobbies over time: everyone in our family can now name most native birds, insects and plants thanks to mum's interest...we all know a smidgeon about computers thanks to dad...my older son keeps us up to date on new computer games, graphics and the companies that create them...my youngest is the car expert. I love the way we expand each others horizons, in these and so many other ways.

Hm. I meant to write something lite, this ended up so serious.

Here’s something to lighten things up again…sons and I were looking up native South American animals for a school project (a book). We came across this site while researching guinea pigs:

http://cuddlycavies.homestead.com/costumes.html

We hit the floor laughing over this one, it’s so cool to come across a funny site by surprise like that :-) It's kid safe, too…

Advice--The Supply is Exceeding the Demand

2006-06-05T06:36:00.000-07:00

Advice is the only commodity on the market where the supply always exceeds the demand.
-Anonymous

Goodness, my family is SO helpful. :-/

Checking my email first thing this morning, I found they’d sent me information about an NBC Dateline program about mercury and chelation, along with more curbie links from the good folks at NBC. What’s with NBC, anyway? Can’t a member of their board of directors have an autistic family member without dragging the entire nation through the quagmire of quack treatments? Sheesh!

“What’s wrong?” asked my husband when I groaned and plonked my forehead on the desk on opening the email.

I pointed, and he just sighed and shook his head.

“Oh, great. Don’t they ever give up?” he asked…and I felt the double frustration of stress from them and guilt that I’d now shared that stress with him. They’re not HIS family, why trouble him with it, right?

Last week they sent me links and information for Autism One (if you want a taste of the ‘curbie’ religion ABFH wrote about recently, this is a good starting point. Ugh, there’s a biomed husband-wife team on there that made my skin crawl, can we all say hallelujah?! They’re all revved up and ready for battle to defeat the autism monster that kidnapped their children, brothers and sisters. Sigh.) . A couple of weeks before that they sent me the link to the Autism Speaks video which p’d me off so badly I decided to take a stand and add my little pipsqueak voice to the other blogs out there.

Before that it was a couple of months of RDI, RDI, RDI; practically everyday I’d open my email and say “Ohmyfreakinggod it’s more RDI info.”

Last year was great fun--ABA and information about NAAR and CAN. Irlen (sp?) lenses. Vitamin A. Vitamin B shots. Now it looks like they’re excited about chelation.

*sobs*

It’s been like that for years…every few days I get an update on whatever new and improved autism treatments are out there. Sometimes they send books, mostly pop psychology. Occasionally it’s a link to something really bizarre, like hbot treatments. But most of it’s just annoying-- the same old stuff I’d researched years ago and discarded as impractical, unsubstantiated or just plain stupid. I’ve tried to explain what I’ve learned, why I’m really not excited to hear more, but it hasn’t made much of a dent in their enthusiasm for ‘new’ information.

I really shouldn’t be surprised. After all, these are the same folks who take a pill for every sneeze, every cough, every ache and pain and sadness that comes along in life. I don’t want to give the impression that I’m totally against medication or therapy, I’m NOT. But I figure sometimes a fever is there for a reason; if it’s not too high, let it run it’s course and do what it’s meant to do. Sometimes bad things happen and we feel sad, if the sadness isn’t too horrible or continuing too long, it can a healthy thing to simply feel it and let it resolve naturally. And sometimes a child melts down because he needs something done (or NOT done) for him, not because he’s in need of a nice shiny pill. I don’t want to throw medications and therapies willy-nilly at my child without looking to see if they’re really needed, might conflict with each other or have side effects that will hurt him years from now.

I’ve seen family members add medications to treat the side effects of other medications too many times. I’m sad and worried that it’s like that for them, but I know it wouldn’t help for me to criticise. I just wish they understood my lack of criticism doesn’t mean *I* want a ride on that merry go round, thanks anyway.

I also don’t think they’re getting that I find it deeply offensive on a completely different level: I find it insulting to myself, my husband and my son that they are so desperate to change what is natural to us.

I know they mean well, I really do…I know they just want to help. If I repeat that often enough, I just might start to feel less upset. I just wish that ‘meaning well’ included honouring our decisions and opinions, and if not celebrating our neurology, at least accepting it as valid.

I had hoped that my being calm about our situation, not getting bogged down in complaints, praising the positives of our lives along with explaining my stance on cures would be sufficient to earn their understanding and respect. Unfortunately, I think I’m going to have to be more specific.

I think I need to tell them the ‘help’ they’re offering is hurting me.

Now I have to go write that dang email. Maybe I should attach my “Curbie Free Zone” painting haha.

That would be easier to do if I thought it would give them a smile.

I wonder.

Yes…no…yes…no…big sigh….

Quiet Moments: Illusions, Compensations and the Space Between

2006-05-31T17:08:00.000-07:00

Illusions

My son has had a recent interest in optical illusions, so this week we’ve thrown a mini-theme on them into our usual home schooling work.

When I was a kid, the ink version of the illusion shown here was my own favourite. I copied it over and over, especially to kill time during high school classes. I loved the play between themes of age/youth, appealing/appalling; still do. I think the simpler version at right is more effective in terms of the illusion, but the Klimt inspired version was too fun to pass up. I enjoy the juxtaposition of themes in his work, it seemed natural he would spring to mind while painting the first version. Besides, I’ve always thought Klimt must have had so much FUN while painting, why shouldn’t I?

My son has been quite interested in these, hanging over my shoulder, “Oooo, she’s ugly-spooky, mum!” in a shivery, fascinated way.

I started painting these as a result of dwelling on the way we react differently to something solely depending on our perceptions. Like being proud of my son's special interests (maps, cars, street signs, this kid is GOING places! sez mum) pre-diagnosis, and then that dropping stomach feeling when worrying about his 'obsessions' post-diagnosis. Same child, same actions, different reaction to them due solely to my own perceptions.

This illusion came to mind...and in turn, the paintings sparked his curiosity about optical illusions in general.

Compensations…

There are a number of daily household chores that I really don’t mind. Actually, I’m lazy and don’t really like the chores themselves, but because they are repetitive, mindless tasks there is the compensation of using that time to let my mind wander to topics that interest me.

SO…I’m washing dishes two days ago. The gears are turning, I'm lost in thought.

There’s a sudden voice at my elbow…

“Mum, there’s an army base that is real. It was on two different cartoons.”

I scramble back to reality.

“Hunh?”

“Mum, I know it’s a real place! Because it was on TWO cartoons!”

“So what's the name of the base?” I ask, groping to make sense of what he’s saying.

“Fort Knox, but that’s not the important part.”

I’m so confused, what on earth…?

“See, it was on Scooby Doo AND Dexter’s Laboratory.”

I’m missing something here, and I’m worried he’ll leave before I understand properly. Keep him talking, eventually it will make sense, I think.

“You’re right, Fort Knox is a real place, though I don’t think it’s exactly an ‘army base’. Do you know what they keep at Fort Knox?”

“Gold.” He frowns a bit.

“Yep, that’s right.”

He realises mum still isn’t getting it, so he tries again.

“Mum, I know it’s a real place because it was on two different cartoons. If it was only on one cartoon it might be made up, but if it’s on two cartoons it IS a real place.”

Suddenly it gets through my foggy brain—he’s less interested in sharing a piece of information, more interested in sharing the thought process that gave it to him. I almost missed that elegant bit of logic. Thank goodness he’s persistent.

I asked when he’d seen the cartoons, but he didn’t remember. Those seemingly unrelated bits of info were probably simmering in his little head for ages, just waiting for one of those lovely quiet 'down' times to hook up and become...Fort Knox! A for-real place, not made up!

The Space Between…

I’m pleased that my son is making progress with his handwriting; forming letters and words has been a difficult challenge for him. At one point, age 4, he refused for months to even hold a pencil or crayon, going so far as to give up his beloved car drawing after the frustration of seeing children in preschool write so easily. I remember him saying, in anger and frustration, everyone at school could write except me. I’m stupid, I’m stupid.

It’s been a long road to help him regain a feeling of competence, and I am mindful of that while we work. It’s hard to give advice or teach and at the same time avoid making him feel criticised. I find myself thinking on my feet as we go, trying to demonstrate ideas to him rather than explain them.

Yesterday:

“Honey, your letters are brilliant, but we need to work on leaving spaces between the words.”

Instant frown.

“There ARE spaces between the words!”

The spaces aren't any bigger than the spaces between letters, I think, and mentally scramble for a way to demonstrate without his closing down from the information.

“Well, have a look at this..."

Youcanbuytatoogumatthestoretoday.

He is angry and annoyed. He doesn't want to look at it.

I tell him he needs to try reading this if he wants to find the secret message, but this time I’ll make it easier.

I write it again with spaces.

He smiles.

Whew, disaster averted.

After homeschool is done we usually go to the little local grocer that’s in walking distance of our house. He has money for gum in his hand.

He picks his gum and goes to pay the cashier. She asks him a question; he misses it, staring at the array of candy on the counter. I poke him gently and he looks up, surprised. She smiles and repeats the question; he answers. I want to hug her. She’s the same girl who left a metallic golden-coloured beetle (miraculously still alive after sitting in the bright sun) in a jar on our front porch this summer with a note that it was for my son. She knows my son loves insects. She also knows he’s autistic. She is kind but matter of fact with him, and gives him a nice taste of ‘official’ type social interaction on an almost daily basis.

This morning…

He’s watching the educational children’s program I allow him while I get ready for our homeschooling day.

“Mum! Look! It’s a stick insect!” he cries.

The host is holding a twig on which there is a lovely bright orange stick insect.

“Wouldn’t it be funny if a dog ate it because someone told him to fetch?” laughs my son.

He and I both have a hard time getting the punchline of some jokes, but that doesn’t mean there’s no sense of humour there :-)

Sorry, I know this is rambling. This WEEK has been rambling, though, and a bit unfocused; often stressful, but with small, quiet compensations for our difficulties.

Choices, or...You Want Fries With That?

2006-05-26T08:20:00.000-07:00

More Perseveration on the Autism Speaks Video.

I can’t get this video off my mind. A few days ago I had my say about the worst of what it presents and avoided the little niggly bits that were bothering me. Now seems like a good time to get the nitpicky stuff that’s bugging me off my chest.

Some of the difficulties touched on by the video are common problems most parents of autistic children have to deal with. Fair enough. I’d like to see more attention paid to the negative reactions we and our children have to endure in dealing with the public, but that really goes across the board for families dealing with many disabilities and neurological differences, not just autism. It would be nice to see more information presented to the public that calls for an increase in understanding and tolerance towards autistic and disabled people in general, children and adults alike. I’d like to see a greater understanding and acceptance especially in schools, both by students and teachers. Our children have a lot to offer and everyone can benefit from increased tolerance.

I don’t think anyone would argue with that.

More support is needed to get our kids into higher education and more work is needed to ensure our ability to perform in the workplace.

These are things we all need to be concerned about, goals we can all agree to work towards together. Things that Autism Speaks SHOULD be talking about.

The additional parts of the video that are really eating at me are the misrepresentation of what is ‘necessary’ for our children and the level of stress that creates on families. Many of the problems discussed here are NOT common to all families dealing with autism, they are problems associated with the choices made by SOME. I keep seeing astronomical figures presented about the cost of raising an autistic child, and I have to tell you, I simply don’t get it! My child doesn’t cost any more to raise than any other child, in fact, since I’m home schooling him, he costs less. I can back that up, btw. It’s the simple truth. I have a habit of checking stuff like that.

I would imagine most ‘parents of’ would never have to complain about being $50,000 in debt because we ‘had to create this environment’, the room full of (probably overpriced therapeutic) TOYS we’re shown in this film. Honestly, my eyes almost popped out of my head when one mother waved her hand towards that room, that supposedly ‘therapeutic environment’. Holy guacamole, batman, that’s a lot of TOYS!

My kids indoor toys, combined, fill exactly two plastic stacking bins each with three drawers. It seems like a lot to me, especially when it’s distributed evenly across the floor of my house. But why on earth are we expected to think it’s necessary to stock rooms full of over priced fripperies just because our kids are autistic? Filling an enormous room full of expensive toys is a CHOICE. That’s not a necessity. I tend to think a cup and a bowl of water to splash in for a little one or a spoon to dig holes in the garden is more therapeutic anyway. Balls to kick. Books. Paper to make into airplanes. Blankets to wrap up nice and snug or an office chair to spin in together….effective, cheap, and they’re definitely therapeutic. In my opinion basic open-ended activities and materials are more enriching to a child than any hunk of plastic, anyway. Oh, except Legos. Those are a necessity, ha.

Medical therapies that are not medically necessary, vitamins, supplements, expensive extra medical procedures that are mentioned by most of the parents here, again, are usually a choice only when one chooses to subscribe to a school of thought for therapy or biomedical interventions that require them. Perhaps a parent who is buying into something like that considers these necessities, but honestly, are they? I don’t want to put someone down for the choice they make, but in the end that’s exactly what it is. A choice. Not a choice shared by all parents of autistic children, not a necessary expense for an autistic child.

The level of stress these people are complaining about has a lot to do with the direct result of the burden these choices create on their time, energy and finances. Ok, you’re stressed because you have to write down all your child’s behaviours. That’s a choice. You have to transport your kids to a constant round of therapies? Is it really necessary? Somehow I doubt these people are talking about your basic OT, speech and PT, we’ve done those and it wasn’t the ‘constant round’ of therapies these mums are complaining about.

We also did that initial round of checkups to make sure there were no further medical difficulties for my son. The genetic testing, MRI’s etc, were all finished within a couple of months, what’s with this constant round of doctors these mums are complaining about? Unless there are medical problems in addition to autism, why are these people complaining about constant rounds of doctors visits?

I have a feeling that is, again, more to do with choice than necessity. Biomedical interventions, especially, seem to be particularly stressful from what I’ve read, both in the expense and in time and extra effort. Again, that is a choice, and certainly not the choice I see most family’s making.

I can’t understand why these problems are presented as something that is shared by all autism families. It’s simply not true.

I’m lucky. I can *choose* not to buy into the misery dished out by this film because I have enough experience now to know better and the luck to have avoided these (ok, to me they seem like fads) when we were vulnerable. Those who are new to autism don’t have that experience, don’t know the more practical side of these issues, and are likely to be scared out of their wits watching this. And those who have no experience at all with autism will see this and look at us with that pathetic expression of pity I’ve come to hate so much--and darn, it I’m proud of my kid! I don’t want anyone’s pity!

I once saw a tee shirt I liked a lot; I think it’s apt to quote the words it had here, since it expresses exactly how I’ve come to feel:

"Piss on Pity"

My kid deserves better.

Katie

2006-05-23T20:19:00.000-07:00

Lest she be forgotten

Sometimes in life our emotions are so great and hard to bear that putting words to them can trivialise the depth of what we feel.

I will keep my sadness close to me, and for Katies sake, leave only this thought:

In the aftermath of a tragedy such as this, any 'explanation' for it's occurance will add insult to injury towards this child.

She has suffered enough.

There is no explanation possible that is good enough to offer to Katie herself. I hope that will be remembered.

Rest in peace, little one.

Info 'Bites'

2006-05-22T01:35:00.000-07:00

Answer at the bottom of the page.

Yeah, I know, it's not exactly a burning question. This will be our homeschooling surprise question tomorrow. I try to have a couple everyday-- just a little bit of information or two from the previous days studies to see how well my son's retaining and for a bit of a fun challenge. This little info 'bite' was funny; we both laughed while we watched a lady try one of these while exploring the Amazon rain forest. She was a bit horrified and squealed a lot. I'm pretty sure he'll remember the answer :)

I found an interesting commentary about the case of the three year old girl who was murdered last week. The blog is called Huff's Crime Blog, the article is Primum non nocere or can be found at http://huffcrimeblog.com/?p=588

I found this interesting reading. The author speaks of the superficial similarities and very important differences between McCarron and his own mother raising his older autistic sister. A very good, thoughtful article.

I've spent a lot of time these last few days looking back to when my son was three, in fact, looking back to when I was that age, the difficulties he had, those I remember having. Its hard not to wonder about this little girl, this mother, why this happened.

But in a way, I don't really want to know. Knowing her reasons seems somehow disrespectful to the little girl.

I hope I didn't startle anyone into spilling their coffee yesterday with my curbie kit. I've seen some things this last year that I simply don't want to have to deal with, and I agree with my husband on this point: this is a necessity for me if I want to blog at all.

I've thought a lot about this...and decided I need to be aware of my limitations at the moment. As much as I feel the need to discuss our life, things we are dealing well with and things we are striving to understand better...I don't think it would be fair to my family for me to end up in a flame war. I did once, about something I felt so strongly about I simply didn't walk away when I should have. I ended up physically ill and completely run down, with no one to blame but myself for my stubborness.

Besides, if someone came on here and called my son names as I've seen happen to others, I think I'd just fall apart.

The answer, btw, is 20. Twenty coconut maggots per day will keep you on your feet long enough to find civilisation. They said they have a pleasant coconut milk taste, but the texture was a bit.

Um.

Crunchy :-O

Whoa! I just used spell check (for the first time on here) You'll never guess what word it picked out as misspelled.

'Blog'. No kidding. It suggests 'bloc' as a substitute.

How ironic ;-)

No, This Ain't Your Playground

2006-05-21T05:10:00.000-07:00

Garlic? Check. Rowan berries? Check. Crucifix? Check.

Ok, I think we're safe now.

My husband is worried about me. When I told him I wanted to start a blog, he said "What! Are you crazy? There are some real nut burgers out there."

See, I've kept him updated on the state of things in autismland, so he's well aware of the goings on I've witnessed this last couple of years, this year in particular. He doesn't want me upset and stressed, he doesn't want us to have to worry about being tracked down and harrassed by curbie/biomed/therapy of the month weirdos. I don't want that either, so...

So, before I ever put fingers to keyboard for this blog, I promised I would blog anonymously. Secondly, I promised I would make this statement:

This blog does not welcome curbie arguing, nasty comments about autistic people (yes, that means you, JB jr) or other highjinks of the underhanded, harrassing and juvenile kind.

Considering the amount of money and political backing curbies are getting from the likes of Autism Speaks, Generation Rescue, etc, ad nauseum, there should be no need to come cause any trouble on my humble little blog. There should be umpteen other places, all probably well funded and advertised in the New York Times and the next commercial break on your boob tube to turn to if you want to talk cure and and say insulting things about people like my family.

This ain't one of those places.

Now I have THAT off my chest...

Tomorrow my son and I start the adventure of studying South America. We're starting with a general overview of the continent, major geographical features, names of countries and flags of same. I have a nice little book, a traditional native story from the Amazon River basin to whet his appetite, a craft (we make our own books about each theme we study, tomorrow he decorates the front in addition to the work pages we'll add), and a bar of chocolate lol. Chocolate IS from South America, it's educational ya' know.

We're also going to use that time and theme to practice his own personal idea of torment, handwriting. He's progressing well with his writing now, strangely enough, since I've agreed to let him have a go at cursive. Isn't that funny, they say our kids hate cursive. He WANTS to learn it, in the beginning he said because he was hoping it's easier to write if you don't have to lift your pencil so much :) He's had two weeks with cursive, and is actually doing pretty well. The main achievement has been he's not so stressed and is enjoying it. That's a biggie in my book.

I'm so proud of his continued interest in different cultures around the world. Last year it was Asia, and especially China. That was a blast. I think it was his love of Asian food that sparked that interest, but once we started learning about the culture, the food, the stories and history, he was really hooked. We started that term learning about the continent of Asia in general, then worked our focus down, down to China. I let him lead the way through most of it, presenting general information and adding new topics as his interests were piqued on different aspects of the country.

I'm keeping positive thoughts and hopes for tomorrow as we begin a new leg on our journey learning about this big old world. I hope he enjoys this as much as he did Asia.

Autism Speaks Once Again Fuels the Culture of Despair

2006-05-19T06:38:00.000-07:00

Has anyone out there in Autism land missed the new Autism Speaks video?

You? You missed it?

Lucky you.

I intended to comment on several points on the video, but it angers me too much. Instead, I'll cover the worst of it. And I have a point to make afterwards.

Oh, yes, indeed.

THE VIDEO

The woman who is holding her daughter, little girl about 8 in a pink shirt? The woman who is saying how her daughter is just like a baby, needs constant attention, that she never gets a break, her life is constant misery because of this child. She's HOLDING that child right there in her arms while she says it. The little girl, during this diatribe, says "Crying?" Turns mum's face towards hers. "Are you crying?" Kisses mum a few times.

Mum is not impressed, you can tell.

Mum wants to talk about her pain and misery at dealing with this autistic child.

Mum doesn’t want kisses.

Kisses are just another interruption, you can tell that much.

This same mum, later in the video WITH HER AUTISTIC CHILD IN THE ROOM as though this was nothing to feel coy about. Says. She contemplated. Driving this child off the George Washington Bridge rather than put her in a school for autistic children. With this child standing in the same room with her. Casually, she says this. It is not a moment of high emotion for her, she is recounting something she has probably talked about many times. She says the only reason she didn't do this was because she has an NT daughter. She would have killed her autistic daughter and committed suicide if it weren't for her NT daughter.

Honest! Right in front of her daughter, she said this!

This video is full of shmucky pity party stuff. I’m not going to get into the rest of it; the retch-o-metre is quickly reaching projectile stage… This woman saying these things in front of her daughter stood out to me as the worst of the video, and probably the worst bit of propaganda that I've ever seen about autism yet.

You want money for autism research, Autism Speaks? Great, knock yourself out. Do you have to run your children (and ours) down to their little faces to get it?

This is really putrid stuff.

But wait! There really is more.

THE RESULT OF DEGRADING AND DENIGRATING AUTISTIC PEOPLE

And this is a real world, actual and direct result from this ‘culture of despair’ type propaganda.

http://www.hoinews.com/news/news_story.aspx?id=8878

About a mother who confessed to suffocating her recently diagnosed autistic daughter. The mother said she wanted to end her daughter's pain, and her own as well. The victim was a three year old child! Why did this mother feel so much despair for her daughters future, why had she given up hope?

Those of us with autistic children and more experience under our belt than this mother had know the likely answer. This woman was probably faced with information very similar to what is found on the Autism Speaks video. It's everywhere; we parents researching to learn about autism are faced with this tripe at every turn. There is no escape from the constant, relentless despair that is being dished out, usually in the name of 'helping' autisic people. On reflection, and with time and thought, most of us will eventually realise there is usually a monetary reason driving this type of propaganda, and can take it for what it's really worth.

But what about this mother? Why did she feel such despair for the future of a three year old child? Did anyone bother to tell her there is hope? That autistic children DO progress, and often beyond anything their parents had dared hope for at the age of three?

Like I said, curbie organisations want money to fund their aims. Fine. Bloody well fine.

Stop stomping all over our lives to get it. We're worth more than that. And so are our/your children.

I’d like to leave you with this thought.

Our children are not here on this earth to fulfill our needs and wishes. We know that intellectually, do we know it in our hearts?

Yes, it’s hard in the beginning learning how to deal with autism and coming to terms with the fact that our children’s lives MAY (and that’s a big MAY) not turn out exactly as we had envisaged before their births. But there comes a point when it’s dead wrong to let our loss of a dream causes real life hurt to our own children.

No child should have to sit and listen to their mum casually discuss having contemplated their murder. And no child should have to fall victim to a parents loss of hope to the extent that child in Morton did.

As parents, we need to stand up and cry “FOUL!” at organisations that are building this culture of despair to their own monetary benefit.

We need rise from the ashes of OUR wants and dreams, and deal with what IS, to the benefit of our children and ourselves.

This may not benefit Autism Speaks or those who want to sell us the latest cure. But it ~will~ benefit our children and our families.

In the beginning was the word...

2006-05-17T19:04:00.000-07:00

Oh look, I have a blog. I've wanted one of these for ages.

What on earth do I do now?

Shh...mum is thinking.

I read an interesting article in New Scientist recently. 6th of May issue, pg 8. "Free will-you only think you have it". I won't pretend to understand quantum mechanics :-) But it is intriguing to think we are living lives that may be predetermined (or even preordained, if you're of a religious bent).

So perhaps where this blog goes, or doesn't, is inevitable, anyway.

I want to talk about autism. I want to talk about homeschooling an autistic child. I'd like to talk about raising an autistic child, as an autistic adult. I want to talk about art. I'm not much in the mood for chatting on forums, conversations take up too much brain power and energy when I have the need to use it on other things. Like painting, raising an autistic child (as an autistic adult), homeschooling. I feel I'm only alloted so much conversational abilities right now, I'm saving them for where they're most needed: my family.

So why am I blogging, you ask.

I'm working my way through a number of different issues. I think it might be useful to present them. Perhaps someone out there will have a useful comment to speed me on my way. Perhaps this will be useful to someone else out there. Mainly, though, this is a way to think out loud. Think my way through things.

Here's an example of what I mean. I had to stop writing a paragraph ago, I heard a thump on the back porch, where my 7 year old son was playing. I ran out back...

"Hey, little dude, is everything ok?"

"Yeah, I'm just throwing rocks through these spider webs to see if it can stop them"

"Honey, I don't think a spider web is strong enough to stop a rock."

"But, mum, why do they say spider webs are stronger than steel if they can't stop a rock? Steel stops rocks."

"Sweetie, if you spun out a piece of steel as thin as a spider web, it probably wouldn't be able to stop a rock either."

He thinks, taps his pursed lips, as he always does while the gears are turning.

He's a little scientist at heart. He comes by it honest, his mum and dad are the same way. We live our lives trying to understand, not really trusting the information we get. Throwing rocks through spider webs to see if they're REALLY as strong as steel, and trying to figure out the results.

What does it all mean?

Shh...mum is thinking.