What a lovely young man:
And some more food for thought that has been on my mind lately:
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Friday, August 15, 2008
Saturday, July 26, 2008
Intermission Videos
I am taking a break from a brain-intensive project I am doing for work. Thought during my break I'd post some intermission videos (videos you can come back and enjoy as you have the time while I am taking a web and phone communication hiatus).
The video clips here (all of varying lengths) are all related to the following theme: TV and Movie Characters Who Could Just Be on the Autism Spectrum ;-)...
Dwight Schrute
Sheldon
Remy
Spike
Snape or Luna??
Gregory House
http://www.youtube.com/watch?v=MCPkoqGyVpI
Monk
Max
Napoleon Dynamite
Joon
Arnie
(I've never seen this movie...but this video made me cry)
Forrest Gump
Juno
Gilligan
Jerry Espenson
The video clips here (all of varying lengths) are all related to the following theme: TV and Movie Characters Who Could Just Be on the Autism Spectrum ;-)...
Dwight Schrute
Sheldon
Remy
Spike
Snape or Luna??
Gregory House
http://www.youtube.com/watch?v=MCPkoqGyVpI
Monk
Max
Napoleon Dynamite
Joon
Arnie
(I've never seen this movie...but this video made me cry)
Forrest Gump
Juno
Gilligan
Jerry Espenson
Wednesday, July 23, 2008
Taking a Little Break
I think I am going to take a little break from online (and phone) communication, including blogging for a week or two.
For one thing, I am not getting enough done this summer and need to minimize distractions. Also, I have a disturbing communication pattern recently in which I seem to be unintentionally offending others, and I'd hate to see this impacting my relationships unecessarily.
I am not sure what is causing this pattern (When I read over the things I am writing, I am often confused by how it is being "heard." That wouldn't be unusual for someone on the neurologically divergent side like myself, as social relationships are a challenge and a source of anxiety and misunderstanding due to differing perspectives and approaches and actual purposes for communication.). But it seems to be another one of those blips in my usual patterns and relationships, so I am going to assume for now that it is temporary and that it may be diminished by the time I begin posting again.
I hope you will stay tuned and rejoin me in early or mid-August for more adventures.
For one thing, I am not getting enough done this summer and need to minimize distractions. Also, I have a disturbing communication pattern recently in which I seem to be unintentionally offending others, and I'd hate to see this impacting my relationships unecessarily.
I am not sure what is causing this pattern (When I read over the things I am writing, I am often confused by how it is being "heard." That wouldn't be unusual for someone on the neurologically divergent side like myself, as social relationships are a challenge and a source of anxiety and misunderstanding due to differing perspectives and approaches and actual purposes for communication.). But it seems to be another one of those blips in my usual patterns and relationships, so I am going to assume for now that it is temporary and that it may be diminished by the time I begin posting again.
I hope you will stay tuned and rejoin me in early or mid-August for more adventures.
Sunday, June 22, 2008
The Stimming House
This picture might also be worth 1000 words:
So we have been in our new house for a little less than a week, and we are still mostly packed up in boxes. I think this is going to go much more slowly than I had been hoping. I just want to be in and settled.
But what is that behind those boxes that are sitting on our 3-season porch? Why...a pool! You just can't see it because I took this picture at night.
For our first couple days here, I didn't have much opportunity to get in the pool. G. and the kids were able to make it in once or twice, but I just couldn't seem to get the timing down. Finally, during the last three days, I've been able to fit in some time in the water each day.
K. has always really loved the water, and M. has been a bit more cautious. We have been on hiatus for a while now from our parent-child swim classes, in part because M. hated the coolness of the water. It is really nice now to have some control over the temperature.
What is interesting is that K. now seems a bit more insecure when we get into the water (it could just be the insecurity of moving coming into play), and also she is not tolerating the temp of the water quite as well. She wants to be in the pool with us, but seems very tentative once in. I am hoping once things settle, she too will settle into the house and life with a pool so she can enjoy herself in the water again.
M. on the other hand, in just these few days, has begun to relax tremendously and enjoy water again. He napped later than usual today, so G. took K. up to bed tonight at the usual time but M. stayed downstairs with me for a little extra time.
I asked M. if he wanted to go dip his feet in the pool, and he said that he did. We went out, and were dipping our feet, and not more than five minutes later, M. decided to go ahead and basically step down into the pool...in his clothes and all. He played very contentedly even as it began to rain. I let him stay in the pool because there were no signs of lightning, but I made him come inside the house once the rain started to come down more heavily.
This child who once seemed to have a mild sensory aversion to pools is now the last to get out of the pool. A transformation largely in this single week of daily swims. We are so lucky to have a pool in our backyard for no-pressure family swims. It beats parent-child weekly lessons hands-down. M. has been able to come into comfort with the water in his own way and in his own time this week. He even is comfortable enough now to let me just lightly support him with a couple of fingers while he tries some basic swimming moves (leg kicks, and basic arm paddling, which is still very rudimentary).
The pool is a great place for "stimming" activities: for rocking, for slow spinning, for kicking and splashing, for bouncing/jumping, for making patterns with the water. We all do these things naturally in bodies of water, especially children. But M. and I both love that it is a built in feature of this house.
We also set up the computer yesterday, and I was playing some music off my mom's blog. M and I were tilting our heads back, looking at the ceiling, and swaying from side to side as we listened to it (along with bouncing and dancing too). The ceiling in the sunroom is a drop ceiling...a nice one, though, as drop ceilings go. The squares are soothing to look at when swaying. Very stimmy, and very soothing, and very bonding.
M's been enjoying some floor space in the living room to work on his new 24-piece puzzle (the pieces are quite large, and the puzzle is something like 2.5 x 3 feet when completed). He can do that puzzle again and again and again with complete focus as long as K. is busy doing something else. Yesterday, he lined up all his matchbox cars across the sunroom and then pronounced proudly to me, "Did it, mama!" Yes, baby, you did!
Even though our lives are still very much in upheaval here, our new home feels so right and good. And very stimmy-friendly. Hooray!
Wednesday, May 28, 2008
Not done (aka: dangerously blogging while angry)
An addition to my writing of a few minutes ago. I just read the comments on the news cast website, and I am all the more horrified. Here is my most recent post on my message board.
Post Four: You know, the comments on the news video...VOMIT! More parent blaming for the child with the disability...more wah, wah, we adults lose it because we aren't allowed to discipline and we have no idea how else to relate to children with disabilities other than to discipline (punish) them into submission. More, no one understands how bad it is for teachers and how this child is surely the devil himself.
Not to mention more excusing the teacher's behavior with the notion that teachers are overworked and underpaid. BELIEVE ME. My wife was a preschool teacher, the most overworked and underpaid of them all. And at one point in a preschool with HUGE discipline issues. But being overworked and underpaid still is not a justification for abuse of a child. It is just not.
I appreciated the person who commented, "Did she really think she could bully him into better behaviour?" Well, given the way we have historically misunderstood and mistreated people with disabilities, it is possible she thought she could. But she was WRONG (and unprofessional and abusive).
Someone commented on the news cast website:
"The teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc."
All of these are actually types of behavioral communication that make sense for a child with aspergers. It is a discipline issue until the teacher figures out what the child is trying to communicate and responds appropriately. The behavior will stop when the need is met. The child is trying to regulate his neurological system. The child is trying to communicate with other children when words fail him. The child is trying to respond to his environment when it overwhelms him. That's hard work, but all this he has had to do all year under the duress of this emotionally unsafe classroom environment.
I just can't get over it.
Saying (as one person did in their comments) "the teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc." about a child getting evaluated for aspergers is like saying about a child being evaluated for visual impairment: "the teacher explained that this student had been a major disruption in her classroom all year: running right up to the chalk board while the teacher was writing, running and bumping into other students, putting her hands on the walls when walking down the hall, sometimes even causing other students' artwork to fall."
Post Four: You know, the comments on the news video...VOMIT! More parent blaming for the child with the disability...more wah, wah, we adults lose it because we aren't allowed to discipline and we have no idea how else to relate to children with disabilities other than to discipline (punish) them into submission. More, no one understands how bad it is for teachers and how this child is surely the devil himself.
Not to mention more excusing the teacher's behavior with the notion that teachers are overworked and underpaid. BELIEVE ME. My wife was a preschool teacher, the most overworked and underpaid of them all. And at one point in a preschool with HUGE discipline issues. But being overworked and underpaid still is not a justification for abuse of a child. It is just not.
I appreciated the person who commented, "Did she really think she could bully him into better behaviour?" Well, given the way we have historically misunderstood and mistreated people with disabilities, it is possible she thought she could. But she was WRONG (and unprofessional and abusive).
Someone commented on the news cast website:
"The teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc."
All of these are actually types of behavioral communication that make sense for a child with aspergers. It is a discipline issue until the teacher figures out what the child is trying to communicate and responds appropriately. The behavior will stop when the need is met. The child is trying to regulate his neurological system. The child is trying to communicate with other children when words fail him. The child is trying to respond to his environment when it overwhelms him. That's hard work, but all this he has had to do all year under the duress of this emotionally unsafe classroom environment.
I just can't get over it.
Saying (as one person did in their comments) "the teacher explained that this student had been a major disruption in her classroom all year: yelling, touching and bothering others, rolling around on the floor, etc." about a child getting evaluated for aspergers is like saying about a child being evaluated for visual impairment: "the teacher explained that this student had been a major disruption in her classroom all year: running right up to the chalk board while the teacher was writing, running and bumping into other students, putting her hands on the walls when walking down the hall, sometimes even causing other students' artwork to fall."
This Is NOT Okay
So a couple days ago, one of the parents on a message board I frequent posted a link to this article:
Post One: I am sitting here sobbing at the thought.
Literally, I could see this happening to my son. I am TERRIFIED of putting him in school.
What does the teacher think this is, an f'ing Survivor episode?!!
Seriously, that was so emotionally damaging for this boy AND all the students in this class. And really, those two little ones who voted against the crowd...you have got to be impressed because at that age, how hard would that be?! Incredible.
Post Two (After someone wondered whether the teacher was engaging in a misguided attempt to teach him natural consequences-- as in, if you behave in a particular manner, you will upset other people and they won't want to be around you):
If it was a natural consequence of his behavior, then I am sure he was already experiencing it.
Where did the IEP come into all of this? That's what I want to know. Because if the kid had an IEP as a result of aspergers, then there likely had to have been some kind of plan to address these types of issues with this kid.
Post Three (When someone reminded me that there wasn't yet an IEP in place): Right. I got so wound up about this that I started forgetting some of the details. Still...
Then someone reminded us of this, from the original article:
Of course what this teacher did would have been awful no matter what student was the victim: a student of any age, with any disability or none at all. But this teacher attended the IEP meetings. She knew what was up. This is disabilism. This is horrific!!
And now, listen to the tape (go to the following link, scroll down to the video box, and click on "watch this story"):
How on earth can the school district say this doesn't meet the standards for emotional abuse? This is absolutely NOT okay, and as for me, I am taking this very personally. Because this is a blow to all human beings who have any sense of decency at all, not to mention all of us who have children and especially those of us with "disabled" children.
But the worst of it is the fact that the damage has been done, to this child and to all the other children in that classroom. Serious damage. It will take a lot of hard work to help these children heal these wounds. The only silver lining I see is that this child is learning in a major way (albeit under unfortunate circumstances) that his parents will protect and stand up for him. May all children come to be so blessed.
Here's a photo of this little guy, lest we run the risk of thinking of him as a hypothetical.
Of course we all-- meaning all the moms on the message board who read the story-- went straight up in arms about it.
Here is some of what I said:
Post One: I am sitting here sobbing at the thought.
Literally, I could see this happening to my son. I am TERRIFIED of putting him in school.
What does the teacher think this is, an f'ing Survivor episode?!!
Seriously, that was so emotionally damaging for this boy AND all the students in this class. And really, those two little ones who voted against the crowd...you have got to be impressed because at that age, how hard would that be?! Incredible.
Post Two (After someone wondered whether the teacher was engaging in a misguided attempt to teach him natural consequences-- as in, if you behave in a particular manner, you will upset other people and they won't want to be around you):
If it was a natural consequence of his behavior, then I am sure he was already experiencing it.
Where did the IEP come into all of this? That's what I want to know. Because if the kid had an IEP as a result of aspergers, then there likely had to have been some kind of plan to address these types of issues with this kid.
Post Three (When someone reminded me that there wasn't yet an IEP in place): Right. I got so wound up about this that I started forgetting some of the details. Still...
Then someone reminded us of this, from the original article:
"Barton said her son is in the process of being diagnosed with Aspberger's, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully. Alex has had disciplinary issues because of his disabilities, Barton said. The school and district has met with Barton and her son to create an individual education plan, she said. His teacher, Wendy Portillo, has attended these meetings, she said."
Of course what this teacher did would have been awful no matter what student was the victim: a student of any age, with any disability or none at all. But this teacher attended the IEP meetings. She knew what was up. This is disabilism. This is horrific!!
And now, listen to the tape (go to the following link, scroll down to the video box, and click on "watch this story"):
How on earth can the school district say this doesn't meet the standards for emotional abuse? This is absolutely NOT okay, and as for me, I am taking this very personally. Because this is a blow to all human beings who have any sense of decency at all, not to mention all of us who have children and especially those of us with "disabled" children.
But the worst of it is the fact that the damage has been done, to this child and to all the other children in that classroom. Serious damage. It will take a lot of hard work to help these children heal these wounds. The only silver lining I see is that this child is learning in a major way (albeit under unfortunate circumstances) that his parents will protect and stand up for him. May all children come to be so blessed.
Tuesday, April 1, 2008
It's Worth It
This documentary is worth the time:
http://www.hbo.com/docs/programs/autism/video/
I am not sure how long the documentary will remain online. HBO said it would be available online on March 30th. I watched it on that day. As of today, it took some serious hunting to find it again. If you have HBO and can get it on demand, that'd probably be the way to go.
My only disclaimers: It's a documentary. It is interesting. I like the personal growth that is evident among the parents over time. I really liked "hearing" Neal's voice at the end. I am not advocating for any position or approach any person takes in this documentary at any particular time. Some things I could relate to, some I could not. Some approaches I felt were useful, some not.
But the video itself is thought-provoking and well worth viewing, and I encourage you to find some time to sit down and enjoy the show before it is unavailable online (or save it to your Netflix).
On a personal note, I am going in for my MRI on Wednesday. I have asked that I get my "commemorative CD" of the images on that same day. This was noted on my chart. I hope they do indeed give it to me on that day, and if so, I will post some images. I am THRILLED about the idea of having a map of my brain.
http://www.hbo.com/docs/programs/autism/video/
I am not sure how long the documentary will remain online. HBO said it would be available online on March 30th. I watched it on that day. As of today, it took some serious hunting to find it again. If you have HBO and can get it on demand, that'd probably be the way to go.
My only disclaimers: It's a documentary. It is interesting. I like the personal growth that is evident among the parents over time. I really liked "hearing" Neal's voice at the end. I am not advocating for any position or approach any person takes in this documentary at any particular time. Some things I could relate to, some I could not. Some approaches I felt were useful, some not.
But the video itself is thought-provoking and well worth viewing, and I encourage you to find some time to sit down and enjoy the show before it is unavailable online (or save it to your Netflix).
On a personal note, I am going in for my MRI on Wednesday. I have asked that I get my "commemorative CD" of the images on that same day. This was noted on my chart. I hope they do indeed give it to me on that day, and if so, I will post some images. I am THRILLED about the idea of having a map of my brain.
Thursday, March 20, 2008
Lost Videos
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.
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.
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.
Thursday, January 31, 2008
Journey of An Aspiring Allie, Part III
...continued from a couple days ago, this is the third part of an approximately five part series on a personal "journey." I am hoping that you will read these posts in order, starting with my January 27th post, part I. I am also hoping that you will view the videos in my posts as they are interjected in the text, before reading further, even if this means you take a few days to read one post. Because this post has many videos, I'll take a few days before posting again to allow folks to catch up if needed.
This series is called: "Journey of an Aspiring Allie." Enjoy!
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I think it would probably be helpful for me to pause for a moment and say that while I have been referring to "autism," what I am actually thinking of is a vast array of labels used to explain neurological diversity of many types.
This series is called: "Journey of an Aspiring Allie." Enjoy!
______________________________________
Subtitle: THE EXCAVATION
(photo taken by my son)
I think it would probably be helpful for me to pause for a moment and say that while I have been referring to "autism," what I am actually thinking of is a vast array of labels used to explain neurological diversity of many types.
I also would like to say that M. does not have an diagnosis of autism at this time. He may or may not be on the spectrum, he may or may not have other neurological challenges, and over time I've come to consider this something about which he has the right to privacy if he so chooses. So while I've been open to date about M.'s strengths and needs, I will no longer be speaking openly about diagnoses, birthfamily history, or so called "risk factors" or contributing circumstances. I regret speaking in the past more openly. I will, however-- like any parent-- continue to be open in sharing with folks about ways to connect with M.
______________________________________
This post will be messy because it is an excavation.
I can't recall any point in time when my thinking about autism dramatically shifted. It is unclear to me how much of that is because I have always had a similar line of thinking, how much of that is because of lack of clarity in my memories, how much of that is the result of memories colored by current perceptions, and how much of that is the result of this being a very slow evolution.
I can, however, identify some random memories that indicate a spectrum of thoughts I've had over the last several years, and also moments that have impacted my thinking greatly:
Spectrum of Thoughts
- Once upon a time, and this is extremely difficult to admit, I didn't think I had it in me to parent a child with a cognitive or neurological "disability." I can be impatient, and I am sooo intellectual. I worried I would snap at my child for not "keeping up with me" as I taught them about the world. I worried I would find it unfulfilling to parent a child who "wouldn't develop typically." I was really ignorant. I didn't put two and two together, that everyone is learning all the time. I didn't realize how fulfilling I would find it, including on an intellectual level, to find ways for my children and I to reach one another-- to really connect and learn TOGETHER-- in both "typical" and "atypical" ways. I didn't realize that I'd be the one having trouble keeping up with my kids as they teach me. And I didn't realize my heart's capacity. It was some time after I was thankfully stripped of my ignorance that I stumbled upon the following video, which so beautifully gave me a visual image to attach to what I want to be as a parent (autistic father and son): http://www.youtube.com/watch?v=trym2trONes
- Non-sequentially, I have had very rare moments of wondering if I can connect with my son, and moments of feeling so wholly connected to M. that it is difficult to describe. The latter being my usual "state." I remember attending a workshop for parents of kids with special needs, and crying as we talked of tools of interaction that I felt would never be of use because M. at that time was bouncing off the walls and I felt I couldn't get his attention long enough to connect.
Moments of Impact
- My relationship with M.'s birthparents and their parents have been significant as I've evolved. This video illustrates some of the things I've been learning: http://www.youtube.com/watch?v=qn70gPukdtY
- I remember when my son was younger, going to a workshop on cranio-sacral therapy hosted by a local organization for parents of children with special needs. I overheard one parent complaining (in front of her autistic child) to another parent that "people just don't get how hard it is." She then explained how she sometimes "had" to lock her child "in a dark closet" for a while in order to "help" him "get under control." I was horrified by this abusive practice. I understand that children with autism may have some different needs in terms of parenting practice than children without autism, I don't think this is what is needed. http://www.youtube.com/watch?v=82hWuQalYkw is a long video. If you don't have time to watch the whole thing, I suggest watching 1:00-3:45 and then 12:40-18:38, or at least 1:00-3:45 and then 12:40 through whatever point you want to stop it. Or you can skip it. The point is that this father is meeting his son where his son is. With so called "neurotypical" children, this is considered good parenting. But somehow, with children who have autism, all that seems to get thrown out the window by too many people. Suddenly, the goal becomes to fight and control our children. I didn't "get it" then, and I certainly don't now.
- One of the most significant shifts in my thinking came after I attended an introductory workshop of the HANDLE Institute http://www.handle.org/, at which point I began to see ALL behavior, my own and my kids' behavior, as communication. Related video: http://www.youtube.com/watch?v=f15JexiQt4U I listened on CD to the most amazing book of all time: The Fabric of Autism: Weaving the Threads Into a Cogent Theory by the founder of HANDLE, Judith Bluestone (a neuroscientist who herself has autism). I no longer had any shred of belief that my son had a deficit, or that I had a deficit as a mother. Judith normalized both of us.
- There came a time in M.'s life, when I began associating with parents of the right type. Four videos that demonstrate what I mean by the right type: (1) http://www.youtube.com/watch?v=VZeESthh2_E (2)http://www.youtube.com/watch?v=bYo3UW0nwEA (3) http://www.youtube.com/watch?v=xLjMs9NpEyY (4) http://www.youtube.com/watch?v=teFYiE0Xt9M
- One of the most freeing aspects of this evolution I've been experiencing is a reconciliation with my own past. Starting with my eldest foster son, I recognized aspects of myself that are hidden by learned social and cognitive accomodation and compensation. I have a lot of memories from my childhood in which my inclinations were atypical, particularly my social inclinations. I continue to struggle in many ways. The example I am willing to share here publically is my compulsion in organization. I am so compulsively organized that if I can't get something organized 100% perfectly, I often have to tune it out completely (aka let it fall into total disarray) in order to keep my mind from looping in a continuous relationship with that and only that. In other words, I get stuck on my compulsions unless I find a way to block them completely, which has consequences of its own. I've learned a lot of coping mechanisms in this regard, some quite healthy and good, and some that I have now been working to unlearn. I asked my dad some time back if he felt that as a child I was developmentally delayed in any way. He told me that no, "if anything" I had been "socially advanced." However, current patterns in my life do reflect memories from my childhood that otherwise may or may not be accurate, and I think I've just learned increasingly sophisticated manners of compensation. I don't consider myself a poster child for what it means to be "neurotypical," and this really is helpful for me in connecting with M. We "stim" together. I honor my own sensory issues by honoring his issues. I find myself having almost infinite patience with him to the extent as I can tap into the special needs I have. We try new things together. http://www.youtube.com/watch?v=R6WwetWc5Q8
Phew! Always still more to say, but I'll give you a chance to read and digest. And I'll take a break from dealing with fragments and return to a more wholistic look in a couple of days. Talk with you more soon!
Monday, January 28, 2008
Journey of An Aspiring Allie, Part II
...continued from yesterday, this is the second in a series of posts about a personal journey I have been on. The posts include a video tour. I hope you'll read posts in this series in order starting with yesterday's.
Motherhood meets us where we lack imagination.
In my case it met me in my own fears about the unknown of "the future," in my own need to control "outcomes" to feel safe, in the stories I was telling myself of scarcity...that the world is a place where we need to fight to make sure our needs are met.
From those first moments together in the special care nursery, M. has been the apple of my eye. I love him. I adore him, and the wholeness of who he is has almost seamlessly been incorporated into the very spirit of my being.
Each day, the creative, loving exchanges between myself and my son are the source of new imaginings. I am braver now, venturing into the future with a sense of optimism that perhaps only a parent of young children can have. Of course I worry like a parent of young children now too, I worry and fret and feel the weight of the world on my shoulders-- on one hand-- but on the other hand, I have found a new grace.
M. does not yet know that the rest of us, the adults in the world, have lost so much of our ability to imagine. He is not self-limiting. He can not be. He is still blessed with the infancy of being in which the greatest concentration of creativity lies.
This gift I have been given is but a precious and fleeting one, to glimpse the infinite, the ultimate. To feel GOD. I cannot explain this creative synergy, this most delicious spark, any other way.
And it is only in the form of a muted veil, periodically blown across my face-- especially when M. was younger and I was yet a newborn to this treasured space in my spirit-- that I worship the idols of limited imaginings, of futures defined by concepts of limited spiritual value. That I grieve, for example, possibilities of college or marriage as I have scripted them, fearful that because M. has this or that neurological challenge in his life, that he will somehow miss out on something I have deemed necessary for a "good life."
"Real idolatry in the Jewish and Christian tradition does not have to do with the worship of statues or pagan altars. Idolatry is rather the profoundly serious business of committing oneself, or betting one's life, on finite centers of value and power as the source of one's confirmation of worth and meaning, and as the guarantor of survival with quality." --James Fowler
M. has challenges and strengths. He is an active, engaged person, and an everyday two year old too. M.'s world is wide open, and without hesitation he is inviting me in.
In that spirit, I bring to you a second video. It was in one of those most vulnerable moments of falling out of grace, that I first saw this video. It was uncomfortable for me to watch (probably in part because of my own sensory issues that make the first 3.15 minutes or so hard for me, and probably in part because of how it rubs against the alignment of ultimate truth and the ways I have found myself disconnected from "God" by fear). Yet, I've found myself drawn back to watch it again and again, each time a little more captivated and a little more hopeful.
Video:
Sunday, January 27, 2008
Journey of an Aspiring Allie, Part I
The following is a link to a video, with which I will begin to share with you a personal journey I have taken over the last 33+ months.
I will share my journey by way of a video tour in a series of posts titled: "Journey of an Aspiring Allie." I hope you will watch the videos (one or more in each post over the next several days) 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.
____________________________________
Video:
http://www.youtube.com/watch?v=QgH65hXp0Vk
The week my son M. was born, I had no idea that I was going to have a baby. At least, I had no idea what age child I was going to have and when.
My dw G. and I had been foster parents with a private, state-contracted therapeutic foster care agency. We had several life-changing, perspective-altering experiences as foster mothers, including the most significant of them all: parenting a teenager with a complicated life (over 2/3 of which had been lived in foster care) and a list of diagnoses a mile long. He had come to us, we were told, as a "permanent foster placement." We had not actually asked to be a permanent home for any child. In fact, we weren't even foster parents when we received the call about this boy. They hand selected us from the community (we had a connection with them through a person in the congregation I was serving, and we had been in touch with them at one point when we were considering getting foster licensed). They called us and asked us to get foster licensed specifically to parent this child. The agency did not do adoptions, but this child needed some kind of a "forever family."
It turned out the agency lied to us, and in a story deserving of its own series of posts, it turned out our dfs was not with us as a permanent placement afterall. Slightly less than a year after his arrival, he left. His exit from our life was devastating. We cried nonstop and swore we would never foster parent again. Being his mothers had changed us forever in ways that I can't possibly get into now without it requiring multiple posts of its own. But let's just say, among many other things, that we had our eyes opened in regard to "disabilities" and that we had a new sense of respect and compassion.
We stuck with that agency for six or seven months before we finally decided to transfer our license directly to the state due to what we felt were irreconcilable differences in philosophy between us and our agency's Director at that time. Shortly after, we decided to apply for an adoptive homestudy as well, so that we could provide permanency for a child if it was in the child's best interests.
It took us about nine months to get our new license and adoptive homestudy completed, and then we began our wait for a child to be placed with us. We accepted a couple of placements for children who ended up staying with their families rather than coming into care. Then we found out about a nine year old who needed a very temporary foster home, and we gladly took her in for the month that her mother could not care for her. Two weeks after she left, we received the call about M. He was just one and a half days old.
When I went to meet M. at the hospital, I knew virtually nothing about him. I knew he was a boy. I knew why his birthparents could not care for him. I knew he was having some difficulty eating and that he was very jaundiced and in the special care nursery. I knew his birth weight. This sounds like a lot to know, but in fact, this information was very watered down at that point. Though I asked many questions, the notes I had taken over the phone filled nothing more than a thirtieth of a letter-sized paper scrap. Still, by the time G. and I had said we were accepting the placement, I was more interested in racing to the hospital than in taking notes (G. had to finish her day at work, which was awful for her...having to wait to meet our baby).
I walked into the special care nursery and, standing by the door, my eyes scanned each bassinet where there were no parents, looking for a blue name card indicating that the child was a boy. I would not be able to pick out my baby by distinguishing family marks; resemblance to me; eye, skin, or hair color about which I had no information; or his resemblance to ultrasound images. I needed a name card, but I couldn't see the names from where I was standing. Within a moment, a cheerful nurse came to me and inquired about my identity. Then she said, "Let me introduce you to your baby."
"Let me introduce you to your baby." Those are words I will never forget. My heart fills with such joy, and I get so weepy when I think of those words.
She led me to a bassinet, where M. was wrapped from head to toe. His eyes were closed (as they would be for seven full days, like a little kitten). He was wrapped up so tightly, that I simultaneously wanted to let him be and scoop him up in my arms. The nurse immediately sensed my hesitation, and thinking that it was about all the machines he was hooked up to, she said, "you can pick him up you know," and she brushed away the machines and put the cords off to the side of M.'s body. Then I scooped him up, and drew him into my chest, taking him in.
In my former life, when I was very involved in childbirth education, I had seen so many real-life and video recordings of birth, with children coming out and gazing at their mothers, that I remember wishing M. would just open his eyes so I could really SEE him. At that time, I felt like I needed to see his eyes to really "be" with him, to really take him in (of course, I believe that the sterile smell of the hospital special care nursery contributed to this feeling, as the smell of starched blankets was too overwhelming for me to catch a whiff of him, and the bright lights and scratchy starched blankets encasing his whole body did not encourage me to run my hands against his skin).
This tendency I had does make some sense. Barring complications, medications in the baby's system, or too bright of lights (for example), babies are born awake and alert and ready for bonding. This means survival from an evolutionary perspective. Their physical structure during the newborn period emphasizes their eyes, which are big with dilated pupils, attracting the gaze of adults. But I did not have eyes to gaze into, so I sat and rocked my baby, too fearful of what the nurses would think or say to unwrap him and get a look at his little body.
I also felt a tinge of fear that perhaps he was totally unaware of me, that he was sound asleep and that I was nothing but another disturbance, another person rudely handling him.
I pulled him in closer to my body, hoping that even in his sleep, even with the tightly positioned blankets that kept his head from my skin, that he could smell me, however faintly. I rocked him, and rocked him, and whispered sweet nothings in his ear. I wrapped his fingers around my pointer finger. He was (and is) sooooo beautiful.
My heart swelled. My dear, precious baby. I was falling head over heels in love.
I will share my journey by way of a video tour in a series of posts titled: "Journey of an Aspiring Allie." I hope you will watch the videos (one or more in each post over the next several days) 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.
____________________________________
Video:
http://www.youtube.com/watch?v=QgH65hXp0Vk
The week my son M. was born, I had no idea that I was going to have a baby. At least, I had no idea what age child I was going to have and when.
My dw G. and I had been foster parents with a private, state-contracted therapeutic foster care agency. We had several life-changing, perspective-altering experiences as foster mothers, including the most significant of them all: parenting a teenager with a complicated life (over 2/3 of which had been lived in foster care) and a list of diagnoses a mile long. He had come to us, we were told, as a "permanent foster placement." We had not actually asked to be a permanent home for any child. In fact, we weren't even foster parents when we received the call about this boy. They hand selected us from the community (we had a connection with them through a person in the congregation I was serving, and we had been in touch with them at one point when we were considering getting foster licensed). They called us and asked us to get foster licensed specifically to parent this child. The agency did not do adoptions, but this child needed some kind of a "forever family."
It turned out the agency lied to us, and in a story deserving of its own series of posts, it turned out our dfs was not with us as a permanent placement afterall. Slightly less than a year after his arrival, he left. His exit from our life was devastating. We cried nonstop and swore we would never foster parent again. Being his mothers had changed us forever in ways that I can't possibly get into now without it requiring multiple posts of its own. But let's just say, among many other things, that we had our eyes opened in regard to "disabilities" and that we had a new sense of respect and compassion.
We stuck with that agency for six or seven months before we finally decided to transfer our license directly to the state due to what we felt were irreconcilable differences in philosophy between us and our agency's Director at that time. Shortly after, we decided to apply for an adoptive homestudy as well, so that we could provide permanency for a child if it was in the child's best interests.
It took us about nine months to get our new license and adoptive homestudy completed, and then we began our wait for a child to be placed with us. We accepted a couple of placements for children who ended up staying with their families rather than coming into care. Then we found out about a nine year old who needed a very temporary foster home, and we gladly took her in for the month that her mother could not care for her. Two weeks after she left, we received the call about M. He was just one and a half days old.
When I went to meet M. at the hospital, I knew virtually nothing about him. I knew he was a boy. I knew why his birthparents could not care for him. I knew he was having some difficulty eating and that he was very jaundiced and in the special care nursery. I knew his birth weight. This sounds like a lot to know, but in fact, this information was very watered down at that point. Though I asked many questions, the notes I had taken over the phone filled nothing more than a thirtieth of a letter-sized paper scrap. Still, by the time G. and I had said we were accepting the placement, I was more interested in racing to the hospital than in taking notes (G. had to finish her day at work, which was awful for her...having to wait to meet our baby).
I walked into the special care nursery and, standing by the door, my eyes scanned each bassinet where there were no parents, looking for a blue name card indicating that the child was a boy. I would not be able to pick out my baby by distinguishing family marks; resemblance to me; eye, skin, or hair color about which I had no information; or his resemblance to ultrasound images. I needed a name card, but I couldn't see the names from where I was standing. Within a moment, a cheerful nurse came to me and inquired about my identity. Then she said, "Let me introduce you to your baby."
"Let me introduce you to your baby." Those are words I will never forget. My heart fills with such joy, and I get so weepy when I think of those words.
She led me to a bassinet, where M. was wrapped from head to toe. His eyes were closed (as they would be for seven full days, like a little kitten). He was wrapped up so tightly, that I simultaneously wanted to let him be and scoop him up in my arms. The nurse immediately sensed my hesitation, and thinking that it was about all the machines he was hooked up to, she said, "you can pick him up you know," and she brushed away the machines and put the cords off to the side of M.'s body. Then I scooped him up, and drew him into my chest, taking him in.
In my former life, when I was very involved in childbirth education, I had seen so many real-life and video recordings of birth, with children coming out and gazing at their mothers, that I remember wishing M. would just open his eyes so I could really SEE him. At that time, I felt like I needed to see his eyes to really "be" with him, to really take him in (of course, I believe that the sterile smell of the hospital special care nursery contributed to this feeling, as the smell of starched blankets was too overwhelming for me to catch a whiff of him, and the bright lights and scratchy starched blankets encasing his whole body did not encourage me to run my hands against his skin).
This tendency I had does make some sense. Barring complications, medications in the baby's system, or too bright of lights (for example), babies are born awake and alert and ready for bonding. This means survival from an evolutionary perspective. Their physical structure during the newborn period emphasizes their eyes, which are big with dilated pupils, attracting the gaze of adults. But I did not have eyes to gaze into, so I sat and rocked my baby, too fearful of what the nurses would think or say to unwrap him and get a look at his little body.
I also felt a tinge of fear that perhaps he was totally unaware of me, that he was sound asleep and that I was nothing but another disturbance, another person rudely handling him.
I pulled him in closer to my body, hoping that even in his sleep, even with the tightly positioned blankets that kept his head from my skin, that he could smell me, however faintly. I rocked him, and rocked him, and whispered sweet nothings in his ear. I wrapped his fingers around my pointer finger. He was (and is) sooooo beautiful.
My heart swelled. My dear, precious baby. I was falling head over heels in love.
...to be continued tomorrow
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