Wednesday, August 25, 2010

For Sirenity's nephew
"As many of you already know, we are trying to help my nephew who is now 18 months old.

He was left with us at the end of February with two changes of clothing, a dozen diapers and a playpen.  My brother has NHL (T Cell). 
My nephew has presented with some alarming behaviours that resulted in several asessments (by a medical doctor, an occupational therapist, a child pshychiatrist).  The reports we gathered were indicative of medical and emotional neglect, poor nutrition and sensory perception disorder.

A court battle for custody is in teh process.  As I did not have any sort of custody (besides defacto) the asessments (except for one) were out of pocket expenses.  There are also legal fees, fees for a court ordered section 15 and psychological testing of all the adults in both my home and my brothers.

So far we have spent over 10,000 cdn dollars and fundraised approximately 2500 dollars.

If you can help we are most appreciative."

Sunday, August 22, 2010

When Our Children Are Abused

It happens. It's one of our worst fears concerning our children: that the people we entrust to care for them will harm them, and it's happened to Kim Stagliano's family. She writes about it at Huffington Post this weekend.

I'd encourage all our bloggers to drop by the post and offer their support to Kim and her family; they've had to live with this knowledge and the aftermath since May without discussing it with the wider online autism community, and I'm sure that kind words will let her know that her family is not alone, that we are all united in making sure our children are safe from abuse, that we support each other through difficult times.

Saturday, August 21, 2010

Pompe disease and the Power of One Family

I'm sure many readers have already seen Extraordinary Measures, the story of John Crowley's herculean effort to find a treatment for his children's Pompe disease. John also has a website. If you haven't had a chance to watch this film yet, listen to the Crowley's talk about their children and their tireless effort to save them at the movie's website.

Far too often in our autism community, there is a narrow focus on autism and how it affects us; we forget that there are so many diseases out there impacting other families, often far more profoundly.

We should strive to be not just an autism community but a disability community, focusing on building support for all families dealing with disabilities and diseases, and to remember that we are not alone.

Wednesday, August 18, 2010

An Interview

Autism Mom Rising and I have been having a wonderful email exchange, which she's posted at her blog. I hope you'll go read it and see that, well, the divides don't have to be so huge when we take the time to be specific and to listen.

Tuesday, August 17, 2010

New Blogs

It's like Christmas. Like shopping, only better. I've added about a dozen new blogs today. We're still terribly unbalanced, though, with family blogs outweighing the blogs by people on the spectrum, so if I'm missing autistic folks' blogs, please let me know so I can add them.

I'd also like to add more blogs by families and people handling disabilities, too, so if you know of some, please send me the links.

In the meantime, can you figure out which are brand new to the list?

Sunday, August 15, 2010

So Many!

I realized this week that we now have so many blogs with frequent posters that I can no longer make it to everyone's blog each day to see what's new in our community members' lives, and I think that's a good thing (the so many, not the lack of time)! We have over 150 family blogs, around 90 blogs by individuals either on the spectrum or with a disability, and close to 50 miscellaneous blogs filed under hodge-podge.

I hope that if you haven't expanded the directories out to see who all's listed, that you'll take a spare minute and see if you can find new faces and go by and say hi. And if you see we've missed a blog, drop me an email and I'll add them. I almost always get them added in less than 24 hours after I've been emailed. :-) 

Friday, August 13, 2010

Repost: Balance and Community Building

One of the things Kathleen and I believe in strongly is community building; in meeting other parents and individuals on the spectrum (and with other disabilities, difficulties, issues, call-it-what-you-will) who are looking for positive, supportive environments in which to work to make the world a more accepting, accommodating and appreciative place.

It's our three A's, if you will, with a fourth, action, tossed in, because in order to have the first three, you need the fourth (and thanks go to Squidalicious for adding the fourth to our mantra several months ago).

So, what does that mean? If you didn't know me before we started the blog directory in May, and you haven't been to Countering, you might not know that I spend a good deal of time countering what I believe to be woo, misinformation, and otherwise inaccurate or unhelpful rhetoric out and about. You could in fairness say that I have an adversarial non-relationship with the editors and many posters at Age of Autism. 

And yet, if you look at the directory, you see that there is a good representation of parents who believe their child's autism is vaccine-related. You'll see biomed parents, too. You'll see parents and autistic individuals who believe in facilitated communication, rapid prompting method, and other things I've written against.  How can that be? If I think it's woo, what are Kathleen and I doing actively directing readers to bloggers who might do chelation? Or HBOT? Now, to be fair, I don't know what all treatments are used by parents, but as long as the parents and individuals are looking for community and support and are focused on making the world a better place for our children, I'm good. Does that make sense?

You don't have to agree with Kathleen and me to be listed here. We're happy to have a wide range of bloggers here, to get to know others better, to appreciate others' perspectives.

What we won't promote, though, are sites that we believe are attempting to do harm.

Otherwise, we try to practice what we promote: 


Below I've posted a piece from Countering from yesterday that explains in greater detail some of my thoughts on how we find ways to work together, regardless of our beliefs about the cause of or best treatments for autism.

Still Good Work? Finding the Way to Balance and Community Building

There are so very many fractures in the online autism community that I often think it's a wonder any of us can talk to anyone else! I can't help but wonder if this is unique to this community because of, well, indelicate as it may be, the BAPpiness that is readily obvious in the parents of autistic children. 
        I own my BAPpiness, and I work very hard to not be overly literal, to try to see things from other people's points of view, to let people be when I can, even if I don't agree, as long as the point of view being forced on others isn't dangerous. And even when I post on the angry place, I take pains to note when the folks there do something right. I try to see them as the multidimensional people they are. They don't often post positive things at the angry place, and yesterday was a double heap of crap they should be ashamed of, but I'm just not going to dwell in that today.
      Instead I want to focus on folks who buy into some of the woo, but who I think also do some good work. Just two days ago, I wrote in my post, Late Night Ruminations, about some books I've been reading to review for Lisa Rudy's site. I wrote, in that late night post (slightly edited for this post), about Rodney Peete's book (review can be found here): The Peetes are doing some good work. Their tremendous love for their children shines through, and Peete demonstrates on page after page that he gets the important stuff: the need to love and accept the child for who he is while you bust your ass to help that child reach his potential. That matters way more to me than the belief that their son is autistic because of vaccines. After all, Jay Gordon's their pediatrician. I enjoyed reading Peete's book and I think it's worth the time, especially if you're looking for a dad's voice. It has practical tips, too (and I can say this while declaring I am not paid for these reviews, not even in scooby snacks; I am however provided with the book -- in other words, I remain with no conflicts of interest to declare).
       Peete's book adds another dimensionality, another layer to the community, to understanding where parents are coming from. It was well worth my time. If you're looking for tips and are new to the autism world, it's worth it for you, too. It's worth it if you're just looking to understand folks better, too, if you want a bit of the larger picture.
       Despite having my attention drawn to the fact that the Peetes will be front and center at woo fest every bit as robust as Autism One, I stand by my review of the book. Reviews of books, if one is being as fair as possible, should be about the words in the book itself, as if the potential reader has no other knowledge of the author. Reviews of books should be about the books, with as little possible bleed over of preconceived notions. If I'd known that the Peetes were going to be appearing at the National Autism Association convention in November  with such, ummm, paragons as Wakefield, Olmsted, Blaxill, Bradstreet, and Soma(!), it would have colored my reading. I can't deny that. 
       It's such a frakking mess. That's not grand company to keep, is it? Ick is my overriding feeling at seeing that line up. Really, it is a massive woo fest. So, what do you do? Do you dismiss, reject, cast out, refuse to work with folks who appear at overwhelmingly woo venues? Do you look specifically at what the individual is saying, what they are after, what they're trying to sell?
      I don't know. I think one has to look beyond the surface and refuse to make snap judgments.
      So, what non-woo is the conference having?
      Well, the first day there is a session on income taxes and disability and one on autism and marriage. Doesn't sounds too woo-ey to me.
       There are sessions on sensory processing disorder and teaching nonverbal children to speak. Could be woo-ey, could not. 
       Of course, you've got Soma speaking. Woo. 
       Olmsted and Blaxill. Holy woo! 
       Bradstreet. Yup, more woo.
       Wakefield! Ding, ding, ding. Woo-winner
       Chantal Sicile-Kira. Hmmmm. Well, you be the judge. She's a big fan of Soma and buys into what AoA sells. 
       On balance, this convention is focused towards biomed parents who choose to pursue all options regardless of the research or lack thereof.
       It's not a convention I'd go to. It's not one I'd want to go to. It's one that's sufficiently steeped in the woo that I'd question those who are speaking there. It bothers me that the Peetes are keynote speakers there.
      When I read this statement on the main page for the conference, I admit I rolled my eyes: "NAA is the leading autism membership organization for breaking through the myths of autism as a mysterious and incurable disorder. Recognizing that the future of those with an autism diagnosis cannot rely on raising awareness alone, we are committed to empowering parents and caregivers with the most up-to-date resources available to enable all affected individuals to reach their full potential."
       NAA promotes actively lots of myths regarding autism, so I don't buy this declaration. But, I have to repeat, the whole conference doesn't appear to be woo. There may be valuable and reality-based information that the parents attending might not get elsewhere, and the NAA isn't excessively gouging them on the conference fee (I've seen the Michelle Garcia Winner charge a lot more for her sessions than the NAA is charging for the full conference for two people to attend). On the balance, though, it will send vulnerable parents into woo, and it will line the pockets of woo-sellers.
       So, what do the Peetes get  out of being speakers there? Are they aware of all the woo, do they actively buy into all of it, are they promoting it? Honestly, I don't know.
      That the NAA's sponsor on that conference page is a company pushing HBOT chambers? Well, geez, not good, is it?
       No, it's not good at all. So, what do you do? How do you decide?  Do you boycott the Peetes' books, their foundation out of principle? I guess everyone will make his or her own mind up on that.

       Here's how I'm going to keep on working to build community. If your focus is on improving the lives of autistic individuals, being supportive and respectful of their individuality, if your focus is on being a positive support to other families, then I'm going to work with you, be friendly with you, and agree to disagree on things like vaccine-injury as a cause of autism. I am facebook friends with people who do facilitated communication, rpm, and others who do some woo that if I think on it, well, you know. As long as you aren't pulling an AoA, pushing the woo, selling the woo, profiting on the woo, I don't have a problem.
       And I'm gonna keep checking into outfits like NAA and other nonprofits to look at what they do with their money, who their sponsors are, what information they provide to the public and how accurate it is.

      But, and this is important, I believe, I'm gonna reserve judgment on folks who support the organizations. And here's why. Most folks don't go digging through tax forms to see how organizations spend their money. Most folks look at the outer shell, see that the organization has stated goals of being helpful, and they support the organization, volunteer for it, heck, even walk for it. They're trying to help. They're trying to make a difference, and they don't deserve to be judged negatively for trying to do good, even if you aren't thrilled with the actual organization.
      So, I'm not thrilled with Autism Speaks on a lot of things. I don't like what they do with most of their money. I think it's obscene for someone to make more than half a million dollars a year from a nonprofit organization. So, I judge the organization and the person taking the bucks. I don't judge the person donating. Even if they know. Why? Because in a lot of communities, the only thing going autism-wise is the Walk. The only thing going.
      We need to work in our local communities to give folks other options, but until we've got that, we're going to have to be pragmatic and work within the structures and organizations that already exist.
       We can stick to tightly described principles and accomplish nothing, connect with no one, because no one is going to see the world in the exact same way we do. Or we can branch out and focus on big goals like building a supportive, respectful community and let some things go, or at least not be directly adversarial while we're working on common goals. And maybe by working on those common goals we'll find a way to bridge divides, respect each other, and care, care enough to find a way to talk about the differences calmly.

Friday, August 6, 2010

Conversations About Controversy Without Anger

There is in the online autism community huge chasms, overwhelming divides, and bucketloads of vitriol. Yup, there's no doubt about that.

But...there's also some really awesome conversations that are compassionate, calm, and hopeful. One of those conversations is occurring over at Little Bit Quirky, and I hope you'll give it a read. If I could hug all these parents, I would. I'm ending my online day with this shout out to that blog and that conversation, so happy to have been one voice there today. Why not go over and offer your thoughts?

Monday, August 2, 2010

Two Must Reads: EEEEing

I'm going to take a friend's license and plug two posts by two of my friends. Kathleen runs the directory with me here, as well as a couple of other blogs we corun with Thelma and Louise. She is, in my opinion (biased, of course, since she is one of my absolute favorite people in the world), a wonderful writer, funny, poignant, heartwarming, and real. On Countering today I recommended folks go read her latest post. It's well worth your time. In light of another recommendation I'm going to make in a second, I really hope you'll take the time to go read another post of Kathleen's as well, To EEEE or not to EEEE.

Another one of my favorite writers is Emily at A Life Less Ordinary. Her post yesterday is so worth your time, and on the heels of Kathleen's second post I've linked to, just a perfect companion piece.

I have been truly fortunate to read some wonderful people and over the last year; I have been even luckier to become friends with so many neat, interesting people. :-)



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