Saturday, March 28, 2009
Small Miracle #34a
The other evening I asked Rob to get take-out since I had been at work all afternoon. Liam's babysitter had taken him to the park, and they got back after the rest of us had started eating. As he sat down and started on his tacquitos, I said, "Tell Daddy thank you for getting the food." He said, "Thanks, Daddy" and then added, "I'm sorry I was late." My son has NEVER apologized unprompted for anything. It struck me as so funny and sweet that his first apology was for something that (a) wasn't his fault and (b) no one was mad at him for. I actually had to leave the room and cry.
Monday, March 23, 2009
Back to Square One
I haven't posted for awhile for a couple of reasons. One is that things for Liam at school have gotten really bad and I don't like to be negative. His behaviors have gotten progressively worse to the point where they're as bad as they were a year and a half ago when we were at rock bottom. He's lost another year academically. I've had to get very confrontational with the school district and have to be careful what I say about that situation.
On another note, last week I attended a legislative breakfast with a friend. It was interesting, but not what I expected. It's a chance for special interest groups to get together with state legislators and discuss their issues and agendas. I would imagine that these types of gatherings are taking place all over the state at this point. I expected to be seated at a table with at least a couple of policymakers. This was not the case.
The big name for this breakfast was Tony Gwynn. He and his wife have a foundation which raises money to fund programs for underprivileged youth. Tony's wife, Dr. Alicia Gwynn, really impressed us with her presentation. She spoke in very specific terms about the challenges facing people with developmental disabilities in California and what should be done to meet those challenges. No other speaker at this event made such a strong impact. At the end of the breakfast, I rushed to shake her hand, introduce myself and thank her for her commitment.
Another speaker (staff member to a state senator and parent of two children on the autism spectrum) used her time to recount the pain, confusion and isolation she experienced when her daughter was diagnosed and how she fought her way through it. She spoke of autism in very negative terms in front of her daughter, who looked to be about 11 or 12. My friend and I had trouble sitting quietly through this presentation. My dilemma with a speaker like this is that I don't want to judge or criticize another parent of an autistic child. We get enough judgement and criticism from outsiders. I just don't know how much is achieved for our children, however, when we make the issue about what we've gone through and how hard it's been on us as parents. It is more helpful to present possible solutions to the challenges our family members face.
Linda Thompson, from People First, presented a positive, inspiring viewpoint. As a woman who has cerebral palsy, Linda advocated for policies and programs that empower people people with disabilities to live independent, fulfilling lives.
One speaker towards the end (a lobbyist and parent of a child with special needs) did something really ballsy. He referenced all of the legislators who had been named at the beginning of the breakfast and asked how many were still there! Most of them had left--a sobering reminder that a lot of what we have to say will not be heard by those who are in a position to take action for our family members. I still left full of hope after witnessing so many people attending and participating in an event to support people with developmental disabilities in California.
On another note, last week I attended a legislative breakfast with a friend. It was interesting, but not what I expected. It's a chance for special interest groups to get together with state legislators and discuss their issues and agendas. I would imagine that these types of gatherings are taking place all over the state at this point. I expected to be seated at a table with at least a couple of policymakers. This was not the case.
The big name for this breakfast was Tony Gwynn. He and his wife have a foundation which raises money to fund programs for underprivileged youth. Tony's wife, Dr. Alicia Gwynn, really impressed us with her presentation. She spoke in very specific terms about the challenges facing people with developmental disabilities in California and what should be done to meet those challenges. No other speaker at this event made such a strong impact. At the end of the breakfast, I rushed to shake her hand, introduce myself and thank her for her commitment.
Another speaker (staff member to a state senator and parent of two children on the autism spectrum) used her time to recount the pain, confusion and isolation she experienced when her daughter was diagnosed and how she fought her way through it. She spoke of autism in very negative terms in front of her daughter, who looked to be about 11 or 12. My friend and I had trouble sitting quietly through this presentation. My dilemma with a speaker like this is that I don't want to judge or criticize another parent of an autistic child. We get enough judgement and criticism from outsiders. I just don't know how much is achieved for our children, however, when we make the issue about what we've gone through and how hard it's been on us as parents. It is more helpful to present possible solutions to the challenges our family members face.
Linda Thompson, from People First, presented a positive, inspiring viewpoint. As a woman who has cerebral palsy, Linda advocated for policies and programs that empower people people with disabilities to live independent, fulfilling lives.
One speaker towards the end (a lobbyist and parent of a child with special needs) did something really ballsy. He referenced all of the legislators who had been named at the beginning of the breakfast and asked how many were still there! Most of them had left--a sobering reminder that a lot of what we have to say will not be heard by those who are in a position to take action for our family members. I still left full of hope after witnessing so many people attending and participating in an event to support people with developmental disabilities in California.
Workshop Debriefing
Back in January I was fortunate enough to attend a two day workshop with an internationally renowned speech therapist in the field of autism, Michelle Garcia Winner.
My first impression was that she is an extremely astute businesswoman. She is constantly traveling to conferences and other speaking engagements around the globe. She has grown her clinical practice to the point where she can travel much of the time. She has also created her own publishing company to print and distribute her many training materials.
Garcia Winner has been working with individuals on the autism spectrum for over twenty years, but her focus has changed. She started out, like many professionals, working with those on the spectrum who are more challenged. Her practice now focuses on children and adults who have an Asperger's diagnosis. She is also working hard to refine the diagnostic categories of autism, as well as create sub-categories and more accurate prognoses--efforts that are greatly appreciated in the autism community.
The first day of the conference was not extremely helpful for me. It focused on teaching social skills to students/clients on the Asperger's portion of the spectrum.
The second day was more helpful to me specifically in regards to Liam, but also emotionally problematic. Garcia Winner went into more detail about her diagnostic categories and prognoses for those categories. If I'm right, Liam falls into her "moderate" or middle category and the most we can expect for him is to live a life of "guided independence". She specifically stated that individuals in this category could never succesfully attain the level of a university education, due to their inability to grasp the concept of inference--the ability to make predictions about events and characters that are not spelled out in the text.
This bothered me on a personal level, as it set limits for my son that I wasn't yet willing to accept. What bothered me as well was her tendency to occasionally poke fun at the clients she treats. It was all good-natured, but my friend Lisa and I agreed that there was something pitying and disparaging in her manner that was neither necessary nor appropriate when she showed video interviews of a pair of twins whom she had treated for ten years. Did these boys have impeccable social skills? No. Did they fit into society's standards of what people "should" act like? No, but they are fairly independent, articulate, self-aware and, most importantly, happy members of society. I would be thrilled if Liam were doing that well in his 20s.
Garcia Winner also, in my opinion, places a huge burden on the shoulders of her clients to change their fundamental natures. She took great pains to describe how grueling and time-intensive her process is and that the gains made are often minimal. In comparing her philosophies to those we learned at the Autism Institute last summer, I had to wonder why all of the responsibility to change falls on those with the disability. Why can't the rest of society learn to accept and embrace those who don't fit the typical paradigm of social behavior? Can the rest of us just get over it if not everyone pretends to be interested in our babies, cats and weekend plans?
One of Garcia Winner's helpful lessons showed how to use movies to teach what she calls "social thinking". She showed a clip from a film and explained how you can use the characters and situations to analyze motivation and make predictions--getting back to the idea of inference. This can be a way of practicing guessing what other people are thinking, since they don't usually tell us directly.
As depressed as I was about Garcia Winner's prognoses for Liam's place on the spectrum, when I showed him a movie that night, I put her suggestions into practice. I was very pleasantly surprised by how well he did. I showed him Enchanted, which I thought was a good film to use, since the characters are so purely crafted for good or evil purposes. He was, for the most part, able to tell me when someone was telling the truth or lying (a very important social skill) and what reason someone might have for lying.
What was even more encouraging: the following week his teacher mentioned to me how impressed she was with his reading comprehension and, specifically, his ability to infer. I was so surprised to hear that that I made sure we were talking about the same thing. I mentioned the workshop and what Garcia Winner had said about people on that part of the spectrum not ever being able to master inference. His teacher said, yes, that's what it was and she had never taught a child on the spectrum who was able to do it.
I mean no disrespect to Ms. Garcia Winner and I'm sure, based on her comments about "well-meaning" (code for "deluded") parents that she would see me as unrealistic, but I choose to see this as yet one more example of how little the experts really know for sure about autism and how very little they know about my son.
My first impression was that she is an extremely astute businesswoman. She is constantly traveling to conferences and other speaking engagements around the globe. She has grown her clinical practice to the point where she can travel much of the time. She has also created her own publishing company to print and distribute her many training materials.
Garcia Winner has been working with individuals on the autism spectrum for over twenty years, but her focus has changed. She started out, like many professionals, working with those on the spectrum who are more challenged. Her practice now focuses on children and adults who have an Asperger's diagnosis. She is also working hard to refine the diagnostic categories of autism, as well as create sub-categories and more accurate prognoses--efforts that are greatly appreciated in the autism community.
The first day of the conference was not extremely helpful for me. It focused on teaching social skills to students/clients on the Asperger's portion of the spectrum.
The second day was more helpful to me specifically in regards to Liam, but also emotionally problematic. Garcia Winner went into more detail about her diagnostic categories and prognoses for those categories. If I'm right, Liam falls into her "moderate" or middle category and the most we can expect for him is to live a life of "guided independence". She specifically stated that individuals in this category could never succesfully attain the level of a university education, due to their inability to grasp the concept of inference--the ability to make predictions about events and characters that are not spelled out in the text.
This bothered me on a personal level, as it set limits for my son that I wasn't yet willing to accept. What bothered me as well was her tendency to occasionally poke fun at the clients she treats. It was all good-natured, but my friend Lisa and I agreed that there was something pitying and disparaging in her manner that was neither necessary nor appropriate when she showed video interviews of a pair of twins whom she had treated for ten years. Did these boys have impeccable social skills? No. Did they fit into society's standards of what people "should" act like? No, but they are fairly independent, articulate, self-aware and, most importantly, happy members of society. I would be thrilled if Liam were doing that well in his 20s.
Garcia Winner also, in my opinion, places a huge burden on the shoulders of her clients to change their fundamental natures. She took great pains to describe how grueling and time-intensive her process is and that the gains made are often minimal. In comparing her philosophies to those we learned at the Autism Institute last summer, I had to wonder why all of the responsibility to change falls on those with the disability. Why can't the rest of society learn to accept and embrace those who don't fit the typical paradigm of social behavior? Can the rest of us just get over it if not everyone pretends to be interested in our babies, cats and weekend plans?
One of Garcia Winner's helpful lessons showed how to use movies to teach what she calls "social thinking". She showed a clip from a film and explained how you can use the characters and situations to analyze motivation and make predictions--getting back to the idea of inference. This can be a way of practicing guessing what other people are thinking, since they don't usually tell us directly.
As depressed as I was about Garcia Winner's prognoses for Liam's place on the spectrum, when I showed him a movie that night, I put her suggestions into practice. I was very pleasantly surprised by how well he did. I showed him Enchanted, which I thought was a good film to use, since the characters are so purely crafted for good or evil purposes. He was, for the most part, able to tell me when someone was telling the truth or lying (a very important social skill) and what reason someone might have for lying.
What was even more encouraging: the following week his teacher mentioned to me how impressed she was with his reading comprehension and, specifically, his ability to infer. I was so surprised to hear that that I made sure we were talking about the same thing. I mentioned the workshop and what Garcia Winner had said about people on that part of the spectrum not ever being able to master inference. His teacher said, yes, that's what it was and she had never taught a child on the spectrum who was able to do it.
I mean no disrespect to Ms. Garcia Winner and I'm sure, based on her comments about "well-meaning" (code for "deluded") parents that she would see me as unrealistic, but I choose to see this as yet one more example of how little the experts really know for sure about autism and how very little they know about my son.
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