birthday boy
May 21, 2009
It’s hard to believe my son just turned 7. I am so proud of him. But it is also another reminder of how much work we have yet to do. He is getting older and we have moved beyond those early intervention years. I wish someone could tell me that I’m doing enough, that I’m doing all that I should be doing or can be doing. But, no one can tell me that. It seems that with autism there is always more that can be done.
THANK GOD we’re finally talking about the abuse of kids with autism IN THEIR SCHOOLS
May 20, 2009
The government is finally doing something about the abuse of kids with autism in their schools! Yes, it is criminal! And, it has been going on for a very long time and in thousands of schools across the nation! Thousands of children have been abused IN OUR PUBLIC SCHOOLS and BY OUR TEACHERS!
I walked into 1 public school on 1 day to have a tour of their so-called inclusion program. We were at Graham Hill elementary school which is part of the Seattle Public School District and we were touring with a Seattle Public School District special education personnel along with the special education teacher of the school. On that 1 day, in that 1 school, and in that 30 minute tour, we were witness to abuse right in front of us as if it were daily protocol and they were even proud of how well-trained they are and how well they handle “crisis” situations. It was appalling. I was in tears. I told the school district personnel that “over my dead body will my son ever step foot in one of their schools, ever”. He has attended a private school and we have paid $50,000 per year for his education. This is so far $100,000 of monies that the federal government (by way of the Seattle Public Schools and the State of Washington) owes my son. By law, he has the right to an appropriate education in the public schools - and these kids should not be subjected to abuse in order to obtain their education!
This is such a big issue for me. Obviously, I am pretty outspoken about this. And, obviously, I am thankful that I have been able to afford to NOT send him to school in the Seattle Public Schools. I will watch closely what happens in these hearings. Below are some links to the GAO report and the House hearings, etc.
Government Report Confirms Abusive Seclusion, Restraint
By Michelle Diament
May 19, 2009
http://www.disabilityscoop.com/2009/05/19/gao-report/3288/
Thousands of children are secluded or restrained in America’s public and private schools each year, including hundreds of cases where the techniques are allegedly abusive or cause death, according to a report released Tuesday by the Government Accountability Office (GAO).
Nearly all of the allegedly abusive cases involve children with disabilities, the report says.
To read GAO Report: http://www.gao.gov/new.items/d09719t.pdf
http://www.npr.org/templates/story/story.php?storyId=104277070
from the Council of Parents, Attorneys and Advocates (COPAA)
A brief roundup on issues related to Restraint, Seclusion, and other abusive techniques in school, including (1) COPAA’s report and ongoing survey, (2) the House hearings today, (3) a place on the House website to comment on restraint, seclusion, and abusive techniques in school, and (4) news reports.
1. COPAA will be updating its report, Unsafe in the Schoolhouse, http://www.copaa.org/news/unsafe.html and will use the information in advocating for stronger policies with Congress. We will continue to collect reports from members of the public. The survey form is here:
http://www.surveymonkey.com/s.aspx?sm=kbizom_2bCU27wrYCCRv7R7w_3d_3d
Thanks again to everyone who has already contributed to the COPAA report. We urge folks to provide reports to us, even if you already provided the report personally to the GAO or to someone else. The report will be updated on a regular basis with the new reports.
2. The House Committee on Education and Labor held its hearings on restraint and seclusion today, “Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools.” The webcast of the hearing is here:
http://edwork.edgeboss.net/wmedia/edwork/fc/fc051909.wvx
We are grateful to Chairman Miller and the other members of the Committee for their leadership in shining a light on the pervasiveness of abusive practices in America’s schools, and for their actions to combat these practices. The GAO’s report, which notes COPAA’s report, is available here: http://www.gao.gov/new.items/d09719t.pdf COPAA also submitted a letter for the record for the hearings, which will be up on COPAA’s webpage soon, www.copaa.org
3. The Committee website contains a place for members of the public to post comments about the hearings or other issues involving abuse in school:
http://edlabor.house.gov/blog/2009/05/news-of-the-day-gao-schools-re.shtml
Scroll down to the very bottom of the page.
4. There are many news reports thanks to the attention the House Committee and Chairman Miller have brought to this issue. They include a story on National Public Radio:
http://www.npr.org/templates/story/story.php?storyId=104277070
CNN: http://www.cnn.com/2009/POLITICS/05/18/siu.schools.abuse/index.html
USA Today: http://www.usatoday.com/news/education/2009-05-18-restraint-gao_N.htm
They don’t lack empathy, they just care too much
May 19, 2009
Asperger’s theory does about-face
Rather than ignoring others, researchers think spectrum sufferers care too much
May 14, 2009 04:30 AM
Maia Szalavitz
The Daily Beast
A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.
People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is a response to being overwhelmed by emotion – an excess of empathy, not a lack of it?
This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with the “intense world” theory, a new way of thinking about the nature of autism.
As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, the theory suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency but, rather, a hypersensitivity to experience, which includes an overwhelming fear response.
“I can walk into a room and feel what everyone is feeling,” Kamila Markram says. “The problem is that it all comes in faster than I can process it. There are those who say autistic people don’t feel enough. We’re saying exactly the opposite: They feel too much.”
Virtually all people with autism spectrum disorder, or ASD, report various types of over-sensitivity and intense fear. The Markrams argue that social difficulties of those with autism spectrum disorders stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10.
If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.
But, of course, this sort of withdrawal and self-soothing behaviour – repetitive movements; echoing words or actions; failing to make eye contact – interferes with social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.
Phil Schwarz, a software developer, is vice-president of the Asperger’s Association of New England and has a child with the condition. He notes that autism is not a unitary condition – “if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term.
But, he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”
So, why do so many people see a lack of empathy as a defining characteristic of autism spectrum disorder?
The problem starts with the complexity of empathy itself. One aspect is simply the ability to see the world from the perspective of another. Another is more emotional – the ability to imagine what the other is feeling and care about their pain as a result.
Autistic children tend to develop the first part of empathy – which is called “theory of mind” – later than other kids. This was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?
Most 4-year-olds know Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, children with developmental disabilities who have verbal IQs equivalent to 3-year-olds also get it right. But 80 per cent of autistic children age 10 to 11 guess that Sally will look in the box, because they know that’s where the marble is and they don’t realize other people don’t share all of their knowledge.
Of course, if you don’t realize others are seeing and feeling different things, you might well act less caring toward them.
It takes autistic children far longer than children without autism to realize other people have different experiences and perspectives – and the timing of this development varies greatly. But that doesn’t mean, once people with autism spectrum disorder do become aware of other people’s experience, that they don’t care or want to connect.
Schwarz, of the New England Asperger’s association, says all the autistic adults he knows over the age of 18 have a better sense of what others know than the Sally/Anne test suggests.
When it comes to not understanding the inner state of minds too different from our own, most people also do a lousy job, Schwarz says. “But the non-autistic majority gets a free pass because, if they assume that the other person’s mind works like their own, they have a much better chance of being right.”
Thus, when, for example, a child with Asperger’s talks incessantly about his intense interests, he isn’t deliberately dominating the conversation so much as simply failing to consider that there may be a difference between his interests and those of his peers.
In terms of the caring aspect of empathy, a lively discussion that would seem to support the Markrams’ theory appeared on the website for people with autism spectrum disorder called WrongPlanet.net, after a mother wrote to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.
“If anything, I struggle with having too much empathy,” one person says. “If someone else is upset, I am upset. There were times during school when other people were misbehaving and, if the teacher scolded them, I felt like they were scolding me.”
Said another, “I am clueless when it comes to reading subtle cues but I am very empathic. I can walk into a room and feel what everyone is feeling and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”
Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away.
For people with autism spectrum disorder, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.
“These children are really not unemotional. They do want to interact – it’s just difficult for them,” Markram says. “It’s quite sad, because these are quite capable people. But the world is just too intense, so they have to withdraw.”
Maia Szalavitz writes about the intersection of mind, brain and society for publications like Time online, The New York Times, Elle and MSN Health. She is co-author, most recently of Lost Boy, the memoir of Brent Jeffs, a young man raised in Mormon fundamentalist polygamy. She is also senior fellow at the media watchdog organization stats.org.
Autism Treatment Acceleration Act
May 18, 2009
this is from autism speaks - keeping us up to date on what’s happening in congress and this has specific action items
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Dear Autism Advocate, Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded Representatives Mike Doyle (D-PA), Chris Smith (R-NJ), Eliot Engel (D-NY), and Hank Johnson (D-GA) for their introduction of a House companion bill to the Senate’s Autism Treatment Acceleration Act (ATAA), which was introduced last month by Senators Richard Durbin (D-IL), Robert Casey (D-PA), and Robert Menendez (D-NJ). Like the Senate version, the House version of the ATAA (H.R. 2413) is comprehensive federal legislation that addresses several critical challenges facing the autism community, including increased funding for scientific research, treatment and services. The ATAA incorporates provisions from the Expanding the Promise of Individuals with Autism Act (EPIAA), originally proposed by Representatives Doyle, Smith, Engel, and former-Representative Chip Pickering. As in the Senate’s ATAA bill, a key section of the House bill requires all insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorder (ASDs), including coverage of Applied Behavior Analysis (ABA) therapy – a medically-necessary, evidence-based autism treatment. While the number of states that have enacted comprehensive autism insurance reform legislation has grown to ten, most state insurers are still allowed to specifically exclude coverage for these critical services, which can cost upward of $50,000 a year – well beyond the means of most families. The House version of the bill also addresses the unique needs of adults with ASDs, creating a demonstration project with one-year planning grants and multi-year implementation grants for the provision of service for adults with autism. In addition, it creates the Network for Autism Spectrum Disorders Research and Services aimed at accelerating the dissemination and utilization of critical, new information, moving it from “bench to bedside” as quickly as possible. |
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birthday party day
May 17, 2009
today was my son’s birthday party. since he loves all things science. we had the mad scientist from “mad science” come to entertain the kids. i have to tell you the mad scientist was great. all 22 kids loves it - especially my son. he scoot his chair right there next to the mad scientist and wanted to be the center of attention doing all of the experiments. and although he doesn’t interact with all of the kids the way an NT might, he really wanted to have his whole class there, lots of kids, and he was right in the center of it all. he did really well and he has a lot of really great kids in his class - very kind, very supportive, and they love the fact that he brings many new interesting things to the table for them to enjoy. his curiosity is probably what will keep some friendships going for him. people will benefit from being his friend.
socializing
May 16, 2009
My son is very social. But, really on his own terms. He went to a birthday party today of one of his classmates. It was a lot of sports. My son is not into sports. Apparently, when it came time to play dodge ball, he did not want any part of that. He is a very logical sort of guy - I mean when you really think about it, who wants to choose to stand in a line to get hit by a ball? So instead of playing all of the sports, he was really more interested in the one electronic component in the gymnasium - the scoreboard! In any setting, he always finds the electronics!
We went to our friends for dinner tonight. When my son doesn’t know what to do in a new social setting, he often looks for his sister so that he can do as she does. Even at the birthday party earlier in the day, he looked for her. He figures if he just does what she does, he should be o.k. Well, my daughter wanted to hang out with her friend tonight and not to be bothered by her brother. So, we discovered the hot tub. He loves to be in water and the hot tub kept him very happily occupied for quite a while. Everyone was happy!
in the classroom
May 15, 2009
I volunteered in my son’s classroom this morning. I enjoy doing that every once in a while so that I can see how he is in the classroom. He is doing well. Still slow to transition, but much quicker than in the past. He even raises his hand and participates in class. He knows his schedule well and follows along.
He has made such great progress - it is really great to see.
a visit to the eye doctor
May 14, 2009
my kids went to the eye doctor this morning. fortunately they were great with kids! but one of the employees there definitely commented (in a nice way) how active my kids were, how we had our hands full. oh, yes. my son loves going to any doctor. the eye doctor is so great because they have so much electronic equipment. if you’re into that kind of thing (electronics that is), especially anything to do with science, well, the eye doctor is the place to be! of course, keeping him from breaking one of those very expensive pieces of equipment was another story.
grandparents left
May 13, 2009
my son (and daughter) are getting much better at saying goodbye to visitors. their grandparents left from their visit and my son actually did very well. he didn’t seem out of sorts and he had a great day at school. so far this week has been great with him. although, he does have a big birthday weekend coming up so maybe that has something to do with it.
new morning plan
May 12, 2009
so, for anyone who thinks life is easy - my son has a morning plan that looks like this below - a plan for things that are very simple for some of us. he also has a similar plan for going to bed at night. He has the opportunity to earn 5 snuggle points with mom for things like going potty, putting on his pj’s, brushing his teeth. He has no trouble understanding radio waves and alternative forms of energy. Yet, it’s these simple tasks that he does each and every day that can be a challenge. Just a little glimpse into his and my world.
I can earn Extra Choice time each day by doing these things when I come to school:
1. I will come right into the school building.
2. I will hang up my backpack and jacket and take out my folders.
3. I will say goodbye to mom quickly at the door and be inside my classroom before the bell rings.
4. I will get started right away on my morning work.
5. I will work away on my morning work the entire time and try my best to finish it.
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Week of ______________________
I earned Extra Choice time:
M____ T_____ W_____ TH_____ F_____
