OT but good: Project Elizabeth
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Sparky
January 9, 2009, 2:33pm Report to Moderator

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Hello guys,

  OK... my big heart has melted again... I normally don't do this, but a child in need is a child in need.

A coworker of mine showed up today with a few small items for sale. She then told me it was for her cousin's daughter, Elizabeth, who is autistic. Elizabeth needs special stimulus treatments which are not covered by our medicare. So the bill for these treatments is 18000$. Here is her website (sorry, French only...):

http://www.projetelizabeth.com/

Ever since that Elizabeth has been following this program, her condition has dramatically improved, but she still needs these treatments in order to keep moving forward and get better.

So what my coworker's mother does to help is that she goes to a local Salvation Army and picks up clothes that don't sell, and converts them into bags and such.

So, basically, I am offering these items here on site. There are large bags made from old jeans (which are really cool!), shoe bags, wine bottle bags (great for gifts!), handmade dishcloths and wool slippers.

A jeans bag is 7.50$, a shoe bag is 3$, a wine bottle bag is 3$, a set of 3 handmade dishcloths is 13$ and a set of slippers is 7.50$. There are different fabrics used for the shoe bags and wine bags so specify a basic color that you like and I will try to get one for you.

Please don't feel obligated to do so.... this is on a strictly voluntary basis. Just PM me if you would like an item or more in the lot. I can even use the MAACA relay system to get it to you to save shipping.

Now... on my part, 100% of all donations until this summer will go to Project Elizabeth. So if you do wish to donate to her cause, feel free to do so through MAACA. My Paypal account is sparky@maaca.net . Also, I will be touching up and clearcoating a few playfields and putting them up on Ebay. They will have "Project Elizabeth" airbrushed on them in the apron area, and 100% of the sale will go to Project Elizabeth.

What can I say... I am a sucker for a cute smile.



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jonny_eh
January 9, 2009, 2:53pm Report to Moderator

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I checked out the site, but due to my substandard understanding of French, it didn't do much for me.

I'm curious about this treatment. What is it? Who created it? Why is it not covered? What scientific evidence is there for its efficacy? (Anecdotal evidence is a FAR cry from scientific). That's a LOT of money to spend on a treatment, I hope it's very well researched!

Unfortunately, there's a lot of pseudoscience in the world of autism. When it comes to diagnosing, curing, or explaining the causes there's no shortage of crazy crackpot ideas.


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Sparky
January 9, 2009, 3:47pm Report to Moderator

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Quoted from jonny_eh
I checked out the site, but due to my substandard understanding of French, it didn't do much for me.

I'm curious about this treatment. What is it? Who created it? Why is it not covered? What scientific evidence is there for its efficacy? (Anecdotal evidence is a FAR cry from scientific). That's a LOT of money to spend on a treatment, I hope it's very well researched!

Unfortunately, there's a lot of pseudoscience in the world of autism. When it comes to diagnosing, curing, or explaining the causes there's no shortage of crazy crackpot ideas.


I don't know the details but I have a cousin that is following a similar treatment as well. I don't know what it is exactly but it works. It isn't covered by our system because there is still a lot of mystery behind autism today. There is a link to the treatment on the site, or merely look up Son-Rise or visit http://www.autismtreatmentcenter.org .

Elizabeth has been following this treatment since 2005 and has made dramatic advances. On the site it explains. No more self-abusive behavior, very little tantrums, and she communicates much better today.

I will take a few minutes tonight from home and translate the site for you.


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jonny_eh
January 9, 2009, 3:57pm Report to Moderator

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No need for that Sparky. I'll go investigate Sun-Rise on my own, just for my personal interest.

So far, nothing overtly pseudoscientific is jumping out at me. This centre has been in operation since the early 80s. I find it odd though that despite being around for so long, they don't have any scientific studies showing the efficacy of their program (maybe they do, but I haven't found it yet). Unfortunately, anecdotes don't cut it. Many times, autistic kids will improve over time, regardless of any treatment. The result being that whatever treatment the parents chose last will get the credit. I've heard people swear buy all sorts of absolute rubbish (proven rubbish by science).
And just because autism is still not fully understood, it doesn't mean that they can't study if certain treatments help a child 'improve'. If this program is as amazing as claimed, it should be relatively easy to prove it works under controlled conditions.

One thing is for certain, the marketing for this treatment program is SLICK.


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jonny_eh
January 9, 2009, 4:12pm Report to Moderator

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Taken from The National Autistic Society UK:

Quoted Text
Pros and cons of the Program

Pros

One of the biggest advantages reported by parents doing the Program is the amount of productive and positive time they can spend with their child (Jordan and Powell 1993). Williams (2004) carried out a survey on parents doing the Program, and many noted that the family generally felt more positive and interaction amongst the whole family had improved since doing the Program (Williams 2004). The Program shares a number of features with other autism-specific programs, particularly the environmental and sensory impact and the need to develop empathy for the way the child sees the world. However, possibly the most striking feature of the Program, is the huge amount of one-to-one intervention the child can receive on a daily basis. There is research to support that such huge levels of intensive interaction can encourage development in the child, though this is not specifically in regards to Son-Rise (Jordan and Powell 1993).

Cons

Apart from the costs of the Program, a major criticism of Son-Rise is that the Options Institute has never allowed or carried out any formal research on the effectiveness of it. It argues that it does not have the resources to carry out any large scale evaluation of the success rate (Kaufman, R. 2002), but it is said to have also turned down external researchers' requests as well. Jordan (1993) points out that the informal, successful reports there have been of the Program have been with young children and there are no reports on older children (Jordan 1993). It is possible that the Program works better for some children than others, with Jordan suggesting that it may depend on a 'certain level of intellectual potential' (Jordan 1993 and Williams and Wishart 1999).

Another difficulty that parents commonly face is recruiting and retaining enough volunteers for the Program. This can be unreliable, especially around holidays when many students go home, resulting in the parents having to cover many hours of the Program themselves (Macey 1994). Williams (2004) found in her survey that the most common obstacle was the lack of, or high turnover of, volunteers. Parents worked for an average of 11 hours a week out of a possible 19 and as a result other problems arise such as not spending enough time with the rest of the family. Howlin (1997) emphasises that any benefits to a child from an intensive program must be weighed against the disruption to family life and relationships (Williams and Wishart 1999). In the UK there may also be difficulties associated with vetting procedures for those working with children.

The emphasis on gaining eye contact is also questioned by some professionals. For some people on the autism spectrum, eye contact can be distressing and uncomfortable. Luke Jackson, a teenager with Asperger syndrome, describes giving someone eye contact as feeling 'as if their eyes are burning me' (Jackson 2002 p70). He also finds it difficult to listen to someone at the same time as looking at them (Jackson 2002). This again emphasises, how the intervention may be more effective for some children than others.



The lack of research really worries me. Why would they deny external researchers? What do they have to hide?

Another thing that worries me, is that it seems like the focus is mostly on getting the children to do things that the parents expect a normal child to do. Things like making eye contact. This can help the parents feel a closer connection with their kids, which is fine, but it can be a very distressing thing for an autistic child to do. Of course, it's hard to tell if this is good or bad because they have refused to do any of their own research, or to allow others to research them.


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-Star Trek: The Next Generation
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-Terminator 3
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Sparky
January 9, 2009, 4:27pm Report to Moderator

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Dude... this isn't a medical debate. I am simply out to help a child and their family. They saw results, and they are happy, and so is the child. You don't like it, don't buy a jeans bag, don't donate to MAACA, and don't buy a playfield later on on Ebay. I didn't ask everyone to buy a bag, just offered them. No pressure. If you think it is all crap, just read the next thread in line.

Jesus... the parents have the link to this, and first post is on full doubt. You mention "for your own personal interest". You should have kept it that way.

Just my 0.02$...

Man, there goes my weekend.


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jonny_eh
January 9, 2009, 4:43pm Report to Moderator

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Hey, chill. I'm just trying to help. I don't want them to waste their money, that's all. No offense intended, my apologies.


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Tuborg
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THat's a boat load of sewing for $18,000 man - good stuff!  

Those jean bags are neat - wonder if she could have different model sizes - you know the annorexic super model size, the rosanne barr size, and the oprah size.   Oprah-size would be random depending on her current size...

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Sparky
January 9, 2009, 8:15pm Report to Moderator

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Quoted from Tuborg
THat's a boat load of sewing for $18,000 man - good stuff!  

Those jean bags are neat - wonder if she could have different model sizes - you know the annorexic super model size, the rosanne barr size, and the oprah size.   Oprah-size would be random depending on her current size...



Yup... I picked up one my size (big-a**) and one woman size.


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