So I discovered after my last post (which I wrote over several weeks before posting), that all videos by Christschool have been taken off You Tube by Christschool himself. I don't know what happened, but I know for a very long time that he has taken a lot of grief from You Tube users who hurl insults for entertainment.
In any case, I am so saddened by the loss of his videos, which were a major piece of my writings below. I do hope that you can perhaps get some idea of what the videos were about by the context of my posts. But after all the time I have put into this, I admit that this is a huge let down.
So sad.
Thursday, March 20, 2008
The Last of My Autistic Allie Series...For Now
The following post is the final post for now from my series called "Journey of an Aspiring Allie." If you have just started reading, I hope you will go back and read the series in order. The first post of the series was on 1/27. The series is in the form of a guided video tour. It's just the way MY mind works.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
Last of personal posts for a while:
I am back from a busy month, and I am getting ready to post again. I'll be returning to opinions, politics, religion, medical ethics, and that sort of thing with my next post, so this will be my last personal post for a while.
Just to tie up some loose ends:
1. We finally SOLD the house! Someone got a sweet deal on it, but now we can move on. In this market, we're lucky to have sold at all.
2. I am still undergoing the necessary neurological testing. I have an appointment on Friday at which I hope to finally have some answers.
3. For those who haven't heard our very sad news: our younger dog, B. died on Valentines Day. He was six years old. It was awful. His leash somehow wasn't fully clipped onto his harness and it snapped off and he went running. M. was frantic and kept calling and calling him. We tried to stay calm, but he wouldn't come back home so we decided we had to wait for him to come back on his own. B. has always been one to run farther and faster if someone is after him, and we didn't want to chase him off. He was hit by a car 45 minutes later. He lived for a short while, but by the time we spotted the police car out at the main road and I got over there, he was dead. It is sooooooo sad, and we all miss him like crazy (except maybe K. who at least seems unphased).
4. I do hope to post about New Orleans within the next week or two. Thanks a million to those who supported the trip. You were all so generous!
Just to tie up some loose ends:
1. We finally SOLD the house! Someone got a sweet deal on it, but now we can move on. In this market, we're lucky to have sold at all.
2. I am still undergoing the necessary neurological testing. I have an appointment on Friday at which I hope to finally have some answers.
3. For those who haven't heard our very sad news: our younger dog, B. died on Valentines Day. He was six years old. It was awful. His leash somehow wasn't fully clipped onto his harness and it snapped off and he went running. M. was frantic and kept calling and calling him. We tried to stay calm, but he wouldn't come back home so we decided we had to wait for him to come back on his own. B. has always been one to run farther and faster if someone is after him, and we didn't want to chase him off. He was hit by a car 45 minutes later. He lived for a short while, but by the time we spotted the police car out at the main road and I got over there, he was dead. It is sooooooo sad, and we all miss him like crazy (except maybe K. who at least seems unphased).
4. I do hope to post about New Orleans within the next week or two. Thanks a million to those who supported the trip. You were all so generous!
Wednesday, February 13, 2008
And to break the theme of my last few posts...
...since I don't have time to finish my autistic allies series right now but don't really want a diary-style blog...
I will post some shameless political evangalism.
Now I feel I must say that I don't follow politics much these days. But a couple of years before the name "Obama" started getting tossed about in the public arena, before many of you probably had heard of Barack Obama, I saw him speak and I said, "This guy ought to be the president of our great country." I have never been so stirred about any politician in the past, including Clinton. I waffled a bit early on in the campaigns, but the specific plans coming from Obama continue to be the better in my humble opinion, than any candidate republican or democrat.
Two of the many reasons I love Obama (watch the videos in the links...most are very short):
http://www.barackobama.com/issues/healthcare/
http://www.barackobama.com/issues/disabilities/
Also check out the following, but once you click into the videos, watch the one called "Our Kids, Our Future" instead of or in addition to the main one in the link:
http://origin.barackobama.com/issues/education/
Having said all that, just for fun I am sure most of you have seen by now:
http://www.dipdive.com/
But did you see this:
http://www.youtube.com/watch?v=3gwqEneBKUs -- "like hope, but different"
Love, masasa
I will post some shameless political evangalism.
Now I feel I must say that I don't follow politics much these days. But a couple of years before the name "Obama" started getting tossed about in the public arena, before many of you probably had heard of Barack Obama, I saw him speak and I said, "This guy ought to be the president of our great country." I have never been so stirred about any politician in the past, including Clinton. I waffled a bit early on in the campaigns, but the specific plans coming from Obama continue to be the better in my humble opinion, than any candidate republican or democrat.
Two of the many reasons I love Obama (watch the videos in the links...most are very short):
http://www.barackobama.com/issues/healthcare/
http://www.barackobama.com/issues/disabilities/
Also check out the following, but once you click into the videos, watch the one called "Our Kids, Our Future" instead of or in addition to the main one in the link:
http://origin.barackobama.com/issues/education/
Having said all that, just for fun I am sure most of you have seen by now:
http://www.dipdive.com/
But did you see this:
http://www.youtube.com/watch?v=3gwqEneBKUs -- "like hope, but different"
Love, masasa
Another Break For Personal News...
I don't intend this to be a diary style blog, but I have some interesting news.
1. Our house is under contract again. The first inspection is Thursday. Keep your fingers crossed for us.
2. I leave for New Orleans also on Thursday. Gah! So much still to do.
3. I received some interesting medical news Monday. I had gone to see a neurologist after G. begged and pleaded. My memory and clarity of thought has become very poor in the last year. The neurologist first gave me a very encouraging prediction. She looked at my throat, noted that it is especially small, and suggested that sleep apnea might be causing not only my neurological symptoms, but also my longtime chronic fatigue. This made me so super duper excited because sleep apnea is treatable with oxygen (read: no side effects other than having to sleep with equipment, a relatively common and doable condition, etc.).
I went and had my sleep study and have been eagerly awaiting my order of oxygen. But the sleep study didn't come back indicating sleep apnea. Instead, it actually brought up some other concerns. I haven't spoken with the neurologist in person yet, but given the little bit that the nurse said and the testing the neurologist has ordered (to happen immediately...they wanted it done this week, but I am going to do it as soon as I get back from New Orleans), it seems she is concerned I am having seizures. If I am having seizures, the questions to me seem to be, what is the cause and what is the treatment?
I am feeling a mixture of being scared and sad, but mostly, excited and eager to have some answers. I hope this isn't a false lead only in that I really want to know what is going on.
1. Our house is under contract again. The first inspection is Thursday. Keep your fingers crossed for us.
2. I leave for New Orleans also on Thursday. Gah! So much still to do.
3. I received some interesting medical news Monday. I had gone to see a neurologist after G. begged and pleaded. My memory and clarity of thought has become very poor in the last year. The neurologist first gave me a very encouraging prediction. She looked at my throat, noted that it is especially small, and suggested that sleep apnea might be causing not only my neurological symptoms, but also my longtime chronic fatigue. This made me so super duper excited because sleep apnea is treatable with oxygen (read: no side effects other than having to sleep with equipment, a relatively common and doable condition, etc.).
I went and had my sleep study and have been eagerly awaiting my order of oxygen. But the sleep study didn't come back indicating sleep apnea. Instead, it actually brought up some other concerns. I haven't spoken with the neurologist in person yet, but given the little bit that the nurse said and the testing the neurologist has ordered (to happen immediately...they wanted it done this week, but I am going to do it as soon as I get back from New Orleans), it seems she is concerned I am having seizures. If I am having seizures, the questions to me seem to be, what is the cause and what is the treatment?
I am feeling a mixture of being scared and sad, but mostly, excited and eager to have some answers. I hope this isn't a false lead only in that I really want to know what is going on.
Friday, February 8, 2008
Deal Fell Through
Just a brief note to say that our deal fell through during the 10 day inspection period over which the buyer can back out. It wasn't the result of inspections. She got worried about her monthly payments. We're keeping our fingers crossed that a new contract is coming our way.
I am heading out to New Orleans this coming week for Katrina recovery work. I may not be able to post for a week or two, but please, please check back...especially as I look forward to finishing my series on autistic allies.
I am heading out to New Orleans this coming week for Katrina recovery work. I may not be able to post for a week or two, but please, please check back...especially as I look forward to finishing my series on autistic allies.
Friday, February 1, 2008
Offer Accepted
While giving folks time for my allie series, I thought I'd just do a quick post to say our home went under contract today. The buyer accepted our counter-offer, which was for our original "worst case scenario" that we budgeted.
It is for an amount which will allow us to pay off our debts. I am praying we'll have enough money left when all is said and done to still have a small downpayment for a house out here, but we'll have to crunch the numbers. If they want us to do anything after the inspections are all complete, we may be in a tough position. I really don't want to go under this amount.
Overall, I am having an interesting emotional response to all this. I am overcome with a silmultaneous flood of regret in leaving this home behind, and absolute relief that we have a buyer, pending any additional inspections (which they've already begun).
I think a true grieving process about this move has begun.
I loved this little house. Most of the best things in my life happened at this house. G. and I closed on this house just before our wedding. I first responded to my vocational call in this house. We became parents in this house. Our children were born while we were living there.
I will miss the community we lived in an incredible amount. I knew this wasn't going to be easy, but...
It is for an amount which will allow us to pay off our debts. I am praying we'll have enough money left when all is said and done to still have a small downpayment for a house out here, but we'll have to crunch the numbers. If they want us to do anything after the inspections are all complete, we may be in a tough position. I really don't want to go under this amount.
Overall, I am having an interesting emotional response to all this. I am overcome with a silmultaneous flood of regret in leaving this home behind, and absolute relief that we have a buyer, pending any additional inspections (which they've already begun).
I think a true grieving process about this move has begun.
I loved this little house. Most of the best things in my life happened at this house. G. and I closed on this house just before our wedding. I first responded to my vocational call in this house. We became parents in this house. Our children were born while we were living there.
I will miss the community we lived in an incredible amount. I knew this wasn't going to be easy, but...
letting go is much harder than I anticipated.
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