Club 166

Missing Important Social Clues

2011-05-23T04:09:00.001+01:00

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One of the hallmarks of autism that is often cited is that autistics tend to miss important social clues. I must admit that this is something that we see often with our son, Buddy Boy (though he has made great strides in carving out "his own way" of initiating interactions).

Most people think that if they see someone that "doesn't get" typical social clues, that that must mean that that person is autistic. Well, not necessarily.

Take David Geier, for instance.

As the whole world now knows, David's dad, Mark Geier, had an emergency suspension of his right to practice medicine recently, due to the medical board catching up with his totally off the wall (and dangerous) antics in "treating" autistic patients.

As was patently clear from complaint against his father, David was up to his eyeballs in this, examining patients in his dad's office. David also had an appointment to the State of Maryland's Commission on Autism, which listed him as a "diagnostician". His one and only degree, an undergrad B.A. in Biology, in no way qualifies him for such a title.

Now, as anyone that follows politics in any part of the world knows, there are a certain portion of politicians and appointees that get caught up in scandals. And there is a certain way of conducting oneself that is expected in such situations. When one is caught up in a scandal, it may be OK to sit tight for a couple of days, to see if things blow over. But once you're actually charged with something, and if someone from the governor's office asks you to resign, you're toast. Your only acceptable course of action is to resign, as quickly and quietly as possible. Not to do so makes you look terrible, as well as causing needless embarrassment to the one who appointed you in the first place. Even really rich and important people know when to throw in the towel when they get caught.

Unfortunately, David Geier is the type of person my grandma would have said "...doesn't have the sense he was born with."

Once the whole scandal blew up, and the lengthy and detailed complaint made it obvious to all that this would not end well for the Geier's, one would think that David would have quit the autism commission. Well, he didn't.

Once he himself was charged with practicing medicine without a license, you would think that he would immediately recuse himself from any public position. Well, he didn't.

When David wouldn't/couldn't see the handwriting on the wall, he was asked to resign. As reported here, he refused.

So finally the governor of the state of Maryland had to come out and publicly fire him.

I'm thinking that the governor will not be so quick to appoint charlatans with transparently false credentials in the future. And much as I'd like to feel sorry for David Geier, I just can't.

The Pigeons Have Come Home to Roost

2011-05-12T05:03:00.000+01:00

photo credit-Eric the Fish
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A medical license is a precious thing. Most people that have one have worked darn hard to get it. They've put in decades of education, paid a lot of money, and sat for numerous exams. They usually feel proud to have earned their diploma, and often don't think much about their medical license, once they've passed the appropriate exams (that is, they don't think about it until they get close to their mandatory re-certification exams every 10 years). The license is often viewed as just "one more hoop" that they have to jump through before they can practice.

But perhaps they should think about their license a bit more. While their diploma from their university and certificates from post-graduate training are (mostly) their own, their license represents the social contract that society has with members of the professions. A medical license granted by the government gives one broad authority-you get to set up shop in your field, admit patients to the hospital, charge fees that are often paid (at least in part) by insurance companies and the government, and have people allow you to cause them all sorts of pain and embarrassment, all in the pursuit of curing or alleviating whatever ails the patient that walks through your door. The state allows members of the profession (collectively) to have great say in educational standards, and grants them at least some exclusivity (keeping competition from untrained persons suppressed, which also protects the public). In return, members of the profession have obligations towards the state/community in which they are licensed. They are to be honest, have a positive obligation to keep current in medical knowledge in their field, not practice in areas in which they are not trained, put the patients' welfare before their own, and always strive not to harm patients.

While it is upsetting when people in the community are hoodwinked by, say, a dishonest roofing contractor, people get more upset when a doctor acts unethically. Even in today's busy world, where people see multiple different doctors, the medical encounter between patient and physician remains an intensely personal one, "protected" by this social contract. It is because of this that people get more upset.

Fortunately, the profession, and the pubic, have a way of "righting the ship" when things go wrong. State medical boards are usually mainly staffed by physicians, with a few members of the general public. All of these members are usually appointed by the governor of the state, in a (fairly) non-political manner. The only compensation usually received typically is a small per diem to cover travel expenses to the capital city (which is usually where meetings are held).

In any profession there will be frauds and crackpots. That being said, my experience is that the vast majority of physicians have worked very hard to get where they are, and really seem to be motivated to do the best for their patients. But in order to retain the trust of the public it is necessary that those who practice fraudulently are weeded out.

It is a big deal to take someone's license away. As I mentioned, they have spent decades of their life preparing to sit for their exams, and invested hundred's of thousands of dollars, before ever seeing their first paying patient. Thus investigations of impropriety usually take time. A medical board is not in the business of stifling innovative practice, and must guard against disciplining doctors whose only crime is being smarter than the norm. But the board IS charged with protecting the public, and thus has to identify and discipline those who ignore their responsibility to practice in accord with scientifically sound practices, and who would view their license as merely a cash generating vehicle.

The Maryland State Board of Physicians has suspended the medical license of Mark Geier, M.D., in an emergency measure to protect the public while he has a hearing before final disposition. In their 48 page report, the Board details how Geier practiced bad medicine (making mis-diagnoses of precocious puberty without standard physical exam or laboratory findings being documented), performed fraudulent research (no consent forms, totally improper in-house IRB committee, poor research design and execution), and allowed his untrained and unlicensed son to practice medicine in his office in his absence. Kathleen (Neurodiversity Weblog) and Prometheus (A Photon in the Darkness) both have very good posts detailing a lot of the bad things he's done, and why he richly deserves to have his license yanked.

Reading through this report, one thing is eminently clear. Mark Geier will never practice medicine in Maryland again. Boards don't get this much damning evidence documented, and then let someone off with a slap on the wrist. While his final discipline may read something like "License revoked with no re-application for at least 5 years", there is no way that any future board will let him get his license back. Not after this.

In regards the other states that Geier has licenses to practice medicine, his license remains active at this time. That (in most cases) will automatically change once his permanent suspension or revocation action takes effect. Most state boards automatically put the same restriction on your license as other states do, unless you can prove to them that you don't deserve it. I am not aware of anyone ever overturning one of these automatic revocations. So while he technically can still practice somewhere else, one can take solace that that option will soon close for him.

While this SHOULD put an end to those spinning wild theories and foisting wholly unproven treatments on autistic patients, it won't. But perhaps it might give a few of those unethical practitioners that have medical licenses just a bit of pause now, as they realize that perhaps their own hucksterism might have the light of truth shined on it next.

Joe

Your Guest Speaker Has Arrived!

2011-01-06T03:46:00.002Z

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Liz related that these were the words that Buddy Boy said when he entered the meeting at the school this afternoon. Was this a disciplinary meeting, an IEP meeting, something worse? No. Buddy Boy's principal (who has a special education background) asked Buddy Boy if he would mind talking to a group of teachers and staff about autism. Dr. D. is a fair person who has high expectations from all of her students, and has also gone out of her way to give Buddy Boy the benefit of the doubt in multiple instances when he has gotten into "situations" at school. We will miss her next year when he goes to middle school (for those that are not regular followers of this blog, Buddy Boy is currently mainstreamed in a regular 5th grade class).

Dr. D. had a few lunchtime meetings with Buddy Boy to discuss what questions she was going to ask him in front of the group (things like how he felt about being autistic, what he liked about it, what difficulties it presented, etc.). I'm not sure what the purpose of the gathering was, but it included teachers from all of the district schools, including the middle and high schools. In short, it was a pretty full room.

Now you would think that most people would be a little nervous talking to such a big group. I myself get nervous talking in front of groups, and I teach! For his part, Buddy Boy gets extremely anxious when he does anything with his peers. He WANTS to be involved with them and do things (singing, band), but at the last minute his anxiety is so high that he has a lot of difficulty partaking in performances, even when he is only one of a group of many that is performing. Thank heaven for occasional guardian angels.

But this afternoon, in front of a room full of teachers, he was in his element. Not a trace of anxiety. He stood in front of them, talked for about 10 minutes, then fielded questions for another 10 minutes or so. I suspect he helped their understanding of how autistics think both directly and indirectly (at one point he did one of his 270 degree segues, saying "...speaking of which, if we could harness the space inside of atoms, we could probably come up with a new energy source to help people out").

The audience was friendly and respectful. One art teacher, who had had him briefly as a student 5 1/2 years ago for a couple of months (when we had a really bad experience in Kindergarten) said that she remembered Buddy Boy. Buddy Boy turned to look at her, addressed her by name, and told her he remembered making a "pinch pot" with her. It's amazing the things he remembers sometimes. Another teacher related how when they were covering a unit on caves, that she learned new things from Buddy Boy that she had not known about caves before.

Liz and I both agree that many there were probably surprised that Buddy Boy considers his autism a "gift". He admits that it causes difficulties sometimes, but he definitely sees the upside of being autistic. He came to this all on his own, without us trying to push him in any particular direction. I think it's great that they see such a perspective, so that perhaps some of them will also see the upside of being autistic, and not pigeonhole students with negative assumptions. I also think it's great that Dr. D. sets such a great example to her teachers and staff. She really gets the message out that she wants ALL of her kids to succeed.

I just think it's great that I can write a post regarding school and a meeting, and feel good about it.

Joe

Christmas Spirit, and New Year's Resolution

2011-01-01T03:04:00.006Z

for some reason Blogger's not letting me post pictures tonight, so no pictures for you

This year the kids are 8 and 10. Sometime soon after last Christmas, Buddy Boy stopped believing in Santa, and ever since then when talking to us about him would make some "air quotes" with his fingers when saying his name. Letting us know that he was big now, and he knew that it was a scam. He promised not to tell Sweet Pea, but of course such promises are hard to keep, and he spent the run-up to the holiday this year in telling her repeatedly that it was just parents.

Sweet Pea has asked several questions, to which we usually just reflected back at her, "Well, what do you think?" With all the logical power that an 8 year old that wants to believe could muster, Sweet Pea came up with reason after reason that Santa had to be real. "I saw it on TV (how he gets down the chimney), he's very fast, and the presents are there with our names on them, so who would have left them?" Buddy Boy has been arguing logic back at her "Why aren't there any sooty foot prints? Parents can eat the cookies we left, how does he get all around the world in one night?", etc.

Coming down to the finish line, I thought she was faltering. "Some kid said that Santa died a long time ago. No one's that fast, and Santa's not G_d. A lot of the kids (even Christian kids) are saying he doesn't exist."

But in the end, wishful thinking won out. She decided that Santa "...must be a ghost. That's how he does it." Of course that would explain everything, I guess. There's no corporal time limit on how long you can do the job, no limit on how fast you can get around the world, etc. I guess I never considered that the "Spirit of Christmas" might actually refer to old Santa himself!

As for Buddy Boy, he came downstairs yesterday and announced to Liz that he "...was going to make a New Year's Revolution". "I think the word you want is 'resolution', dear." "Oh, yeah. A New Year's Resolution. I'm going to be nicer to Sweet Pea this year (he's actually overall nicer to her than she is to him). [he paused] I've got another resolution. I'm going to help Sweet Pea be nicer to me, too."

If only the world worked that way.

Happy New Year to one and all! This last one has been a bit tough (lots going on behind the scenes and all), but I'm hopeful that the coming one will be better. At least we all made it through 2010 in one piece, and neither kid got kicked out of school!

Random Thoughts

2010-11-21T01:00:00.000Z

photo credit-moreno finotto
creative commons license

Did you know...

That if you run hot water in the sink and put enough toothpaste in it, it makes the bathroom "smell good"?

That if you put half of a (large) bottle of hair conditioner into the bathtub and stir it up enough, it makes a decent amount of bubbles (the residue is also VERY slippery during dad's shower the next morning)?

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Buddy Boy has discovered that inserting scatological silly references into conversation and using them in a loaded question is very funny-to him-but perhaps not so funny to his teachers.

Last week he asked his teacher something to the effect of "Did you poop in your diaper this morning?", which earned him a trip to the principal's office, and an assignment for him to present something to the class this week on "Respect".

While bringing in the poster that he was going to use in the presentation this week, the principal said good morning to him. He responded "You know, Dr. P, I think I may have discovered that there are some negative things about being autistic. Do you want me to tell you about them?"

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I was driving Sweet Pea to her speech therapist this morning (her "R's" might pass in Boston, but not here, and her inability to properly pronounce "L's" or to differentiate "S's" from "SH's" earns her a weekly Saturday morning at speech (after both she and Buddy Boy have ice skating classes), and her and I doing speech exercises about 3-4 nights/week.

The nice thing about this is we have a little father daughter time to ourselves in the car. Today we were driving along and out of the blue she says "You know, dad, times are hard." First I thought that perhaps my 8 year old had just had an economic revelation. Then I wondered whether she had a twinge of social consciousness, and that perhaps I could be really proud of my little girl. Just to be sure, I asked her "What do you mean?"

"You know, dad, doing times. 5 times 3, 5 times 4."

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Buddy Boy goes to a social skills class every week. Perhaps it's starting to pay dividends. Today he asked Liz, "So, we should have a discussion (I think this was a "homework" assignment). But I don't know how to start."

"Well, what do you want to talk about, sweety?"

"How about machinery?"

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Angels exist, and sometimes show up at the best times.

This last week we had the first 5th grade band concert. As you may recall, although Buddy Boy loves band, the teacher doesn't necessarily feel the same way about him. So although we're very happy that Buddy Boy loves band, we were also both very anxious going to this concert, and hoped to escape the night without Buddy Boy doing something that would give the band leader an excuse to discharge him. We dropped him off in the designated classroom, and went to the gymnasium to wait and fret.

As soon as the band started walking in, we saw his angel. Walking with him was his 3rd grade teacher (who we loved), Mrs. C. Mrs. C always went "above and beyond" when working with him that year. Both Liz and I dared to exhale, and palpably felt 1000 pounds (454 kg) of anxiety fall away from us. The band took their seats, and Mrs. C sat next to (and a little behind) him.

Mr. C (Mrs. C's husband) works with the band (the brass players, not the woodwinds). He was there that night, and though Mrs. C had called in sick that day, she showed up that evening to be with Buddy Boy (evidently she had become aware of Buddy Boy's "troubles" in band thru her husband). We didn't know that anyone was going to be with him on stage, much less Mrs. C.

The long and short of it, Buddy Boy did fine (even if he did talk a bit more than appropriate to Mrs. C during the concert). Buddy Boy even had a brief solo (about 2/3 of the band volunteered to do solos, including Buddy Boy). He played his solo about 3 times slower then we practiced at home, and it was so soft as to be barely audible, but he got thru it without any major mistakes, and did fine.

G-d bless Mrs. C.

Joe

"If That"

2010-10-31T06:28:00.003Z

Good News! Buddy Boy has decided that he likes the clarinet, and wants to play in the school band. For 5th grade music, students have a choice of either taking a "normal" music class, or participating in the band. Buddy Boy chose the band. He wanted to do this when school started, and he wants to do this now.

Bad News! We came home to find this letter:

"Buddy Boy" is not finding much success in band. He is able to play alone when we do solos, but when the whole group plays, he is not able to focus on what we are doing and participate. He is often taking apart and putting together his clarinet. When he does play with the group, he is overblowing and squeaking quite often. He is probably trying to play louder so he can hear himself, but this causes him to have a poor tone and squeak. "Buddy Boy's" behavior during class has improved and having "Mr. Jones" with him has been helpful.

Our interactions with Buddy Boy's present school have been pretty straightforward, with only a few bumps in the road. Most of the time, his teachers have liked him (the most important thing you can look for, IMO), and have approached any problems with an attitude of wanting to find a successful solution for him.

I suspected band was going to be a problem. The band teacher is a district wide teacher. Not only is she the teacher for the grammar school (up through 5th grade), but also for the middle school and high school. So we're stuck with her for the duration. 5th grade band is (as I stated above) offered as an alternative class for music, not as an elective after school activity. Students attend during regular class hours. When he expressed his wish to join the band, Liz took him to the band leader, to see what she recommended as an instrument. She looked dubiously at him, and stated something to the effect of "I think he'll be able to possibly play the clarinet, if that". We were hoping that Buddy Boy's determination and charm would slowly win her over, but that appears not to be happening.

About four weeks in we got a call that Buddy Boy's behavior was unacceptable. Liz asked if the leader had discussed this with his regular or special ed teacher (she had not). I think she expected us to say "Oh, well, we'll just withdraw him from band." As he really likes it, we're not going to do that. Like most kids on the spectrum, he takes a while to "get" new situations. With a little guidance (and yes, some forbearance on the part of others) he eventually settles in, and does reasonably well. After that conversation, "Mr. Jones" was added as an aide during the class, to help him not be disruptive. No mention ever has been made regarding Buddy Boy's ability to play.

For our part, we took him for some private lessons over the summer, knowing he wanted to play. He didn't learn much music, but started to get a grip on some of the basics (how to put it together, where to put his fingers, how to play scales). We thought he was doing OK. I'm sure he's not the star of the band. But he practices 3-4 times a week, and seems to do reasonably well (he can play several of the songs sent home with him). When I work with him, in addition to having him play at his own pace, I either count or hum, to simulate the rest of the group playing, and get him accustomed to playing on a group rhythm. Most of the other kids have not played before, so it's not like the rest of the group is filled with virtuosos. We can't take him for private lessons during the year. He has about an hour after school where he will pay attention, and that time is used every day by Liz keeping him current with homework and stuff he didn't finish in school. Saturday mornings he takes part in the only regular physical activity that he'll still do, ice skating lessons. We don't want to discontinue that.

In the US, we have laws like the ADA (Americans with Disabilities Act) and IDEA (Individuals with Disabilities Education Act) which theoretically ensure that each individual will be treated fairly, and not discriminated against. But the law is one thing, and attitudes another. And when individuals decide that they don't like your kid, and don't want to "deal" with him, then it's an uphill battle. Many studies have shown that teacher's preconceived notions of a child's intelligence determine whether that child will be successful in their classroom. And it just appears to me that this particular teacher decided up front that our kid just wasn't going to be successful.

I'm not sure how we're going to proceed on this. I don't think they have to keep him in band (they could say he's not working out, he has to take the "regular" music class). So calling an IEP and making demands for them to make it work might indeed backfire. So I suspect we'll talk to his other teachers, and possibly the principal (who has mostly been supportive and understanding), and see what we can do. Somehow I doubt that we'll change the band teacher's attitude, but I'd at least like to see Buddy Boy be able to stay in band this year.

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Apologies for not posting more often. Things have been busy. School continues (I should finish in May!), work is busy, and home has been hectic. Life goes on.

Joe

TV Psychologist Gets It Right

2010-07-27T04:53:00.001+01:00

There's been a story going around that I just heard about a couple of weeks ago. Abbie Dorn, a young mother of triplets who suffered severe brain damage due to complications during delivery, is in a legal battle to see her children. Her ex-husband, who divorced her just a year after the event, saying he needed to "move on", has prohibited their three (now four year old) children from visiting her, and even prohibits anyone mentioning her at all to them. Oh, and after she received a malpractice financial settlement, he's reportedly suing her for child support.

Good Morning America covered this story on April 14th of this year, and played up the "tragedy" of the whole situation. It wasn't terrible coverage, but it wasn't too great, either. It didn't really scratch the surface, so was more exploitative than anything else, as far as I was concerned.

On July 10th I happened to catch this story for the first time on CNN. The Dorn story starts about 3/4 of the way down the transcript that is linked here. After going over the basic facts, the CNN anchor went to Dr. Wendy Walsh, a clinical psychologist who specializes in relationships for commentary. I must admit that I am usually biased against talking head TV psychologists. They either seem to a) say something that is so "common sense" that you just go "Duhh", b) try to wedge whatever topic it is into pushing some agenda of their own, or c) come up with some off the wall thing that they couldn't possibly infer from never ever meeting or talking with the principle people involved.

Dr. Walsh's comments both surprised and pleased me. She was both thoughtful and insightful. After the story focused (much like GMA) on whether Abbie could actually communicate or not thru blinking, Walsh immediately cut thru that to comment

And, you know, the question is, who cares if she can communicate or not? There's a living, breathing mother there...Who deserves to see her children. And the children, you know, Don, kids - everything is new and normal in the world of small children. I don't think that they'll be overly traumatized. Would people prefer that they're given a cold teddy bear to comfort them?

Walsh quickly followed with

And, you know, the biggest question this raises for me, Don, is what's going on in our culture that we institutionalize people with disabilities to the point that now we think it's just so wrong to even look at them or be exposed to them? What does it say that we're sweeping away the ugliness and not allowing families to have an integrated experience with people with disabilities? I think it's making us lose our compassion for people with disabilities.

Walsh also blogged on the story on her own blog here, where she also wrote

I’m concerned that the more we insulate people, young and old, from seeing the full range of human possibilities the more we limit our capacity for compassion.

My hat's off to Dr. Walsh. Rather than settle for a superficial recounting of a "tragedy", she cared enough to dig a bit deeper, and provide some thoughtful analysis. Like a good documentary film maker, she challenges us to think deeper not just about this particular situation, but about ourselves and the wider world.

Maybe I should pay more attention to TV psychologists. Or at least this one.

U.S. Seclusion Bill Alert

2010-07-16T03:55:00.001+01:00

photo credit-David Paul Ohmer
creative commons license

I subscribe to the Wrightslaw Special Ed Advocate Newsletter. The Wrightslaw.com website (run by two people named "Wright"-who would have figured), which is a great source for getting/keeping yourself informed with all things having to do with special education law. They also publish a few books, which I have found helpful.

The use of restraints and seclusion in U.S. schools has been a fairly hot topic over the last few years in the U.S. There are at least 3 different (general) views on this. One, that all people deserve basic human rights, and tying them down and putting them into locked closets at school are not the type of thing that should be done to anyone. A second view (we'll refer to it as "the ignorant view", for lack of a better term), thinks that special ed kids shouldn't be mainstreamed with the general population in schools. And if they are, then if they are at all "disruptive" then it is perfectly OK to do "whatever it takes" to preserve peace and quiet in the schools, including tying kids down, putting them in locked closets, or having them arrested. And wouldn't things just be much better if they all just went back to "some other place" to be ~~educated~~ warehoused. A third view is (roughly) that any proposed laws will never do what we think they will do. The bills will just be used to normalize abnormal treatment of the disabled, including instituting/requiring ABA treatment as the "gold standard" of ~~education~~ cruel and unusual punishment.

Federal laws (referred to as "bills" before they are passed) are passed in the U.S. by being voted on by two houses of Congress, the House of Representatives (or just "House") and the Senate. After being signed by the President (or in some cases, even after them not being signed) the bill becomes law.

The U.S. House passed H.R. 4247 (the House version of the bill), and passed it on to the Senate. The Senate version is referred to as S. 2860. Evidently the Senate version would change how student's Individual Education Plans, or IEP's, are administered.

Wrightslaw sent out an e-mail alert today, stating:

The Senate would let school staff put restraint and seclusion in a child’s IEP or 504 plan. Call your Senators now and ask them to reject this proposal.

The Proposed Amendment to S. 2860 Will Take Away IDEA Rights. Unlike IDEA, 504, and ADA, the Restraint/Seclusion bill has been written to prevent parents from seeking to enforce it in with lawsuits.

The new law (S. 2860) would take precedence over the old law (IDEA).

The Wrightslaw alert also included these helpful instructions for taking action:

How to Call Your Senator

1. Always use the bill number, S. 2860, Preventing Harmful Restraint and Seclusion in Schools Act. Please call; Senators pay more attention to calls. Email may get lost. Use Email only if you must.

2. Dial 202-224-3121 (TTY 202-225-1904) or go to www.senate.gov, click on Senators for contact information (including local numbers). You will have 2 Senators. When you call, ask for their Education or Disability Aide. Leave a detailed voicemail message if they are not available. Be sure to identify the bill by name, Preventing Harmful Restraint and Seclusion in Schools Act and use the number, S. 2860.

3. Please call your Senators - but especially if you live in these states on the Senate HELP Committee: AK, AZ, CO, CT, GA, IA, KS , MD, MN, NC, NH, NM, OH, OK, OR, PA, RI, TN, UT, VT, WA, WY. If you are in these states, check the HELP Committee website so you call the Senator on the Committee, http://help.senate.gov/. If you have friends or family in the Committee states, please get them to call. And even if you are not in a Committee state, please call. Senators from all over the country are impacting this bill.

4. Call Senator Tom Harkin and ask for his disability counsel (phone 202-224-3254, fax 202-224-9369). Senator Harkin chairs the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/ and has much power over this bill. He needs to hear from parents and advocates from around the country; he certainly is hearing from the other side.

Here is a link to http://www.senate.gov/, which has a nice little "drop down" box on the top right to find your own state's senators, and to the committee page for the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/.

Senator Tom Harkin, from Iowa, has always been a pretty good advocate for disability issues. He is also the Chair of this committee. Even if you don't live in his state, I urge you to contact him, and not let this portion of the bill be included.

For a brief overview of how U.S. laws are made, watch this:

Honesty, Justice, and Trust

2010-07-02T15:43:00.004+01:00

photo credit-navets
creative commons license

I'm not the kind of person that immediately shouts for someone to lose their job when they do something wrong. We all make mistakes, and jobs are hard to come by nowadays.

But I'm also the kind of person that gets their dander up when organizations try to sweep problems under the rug, and whitewash a situation to cover their own backside.

I recently wrote about how two police officers in Tybee Island, Georgia tased a young autistic man who was sitting outside a restaurant waiting for his brother, who was inside. They not only tased him, but wrestled him to the ground, bruising him and breaking his tooth in the process. Originally, the police chief did what might be expected. He defended the actions of his men, and even went so far as to "blame the victim" and his family somewhat by saying that he was sorry that he had been left "unattended". That last statement, which implies that no one with any kind of disability that impairs communication should ever be left alone, even for a few minutes, got me (and a lot of other people, I'm sure) very upset. I don't realistically expect that the whole world will change overnight, and that the world and everyone in it will totally understand my autistic son as he grows up. I also don't think it unreasonable that he should not have to fear being beat up and tased for sitting on the curb outside a restaurant on a hot day.

Evidently there are some reasonable people living in Tybee, and some of them are actually in a position to do something. According to this article:

Tybee drops charges against autistic teen

WTOC11 reports that,

Tybee Island Mayor Jason Buelterman and Schleicher asked Police Chief Price James W. Price to have the GBI investigate the incident and make sure no laws were broken by police.

Many politicians, both local and national, would have followed on what the police chief originally said, and would have tried to cover up the situation and hope it would go away. I applaud the mayor and city manager, who asked a neutral party (the Georgia Bureau of Investigation-the state counterpart to the FBI) to look into the matter. As police officers themselves, the GBI would have an excellent understanding of what proper police procedure in such cases should be, as well as having practical experience in similar types of situations. Yet as a neutral party, they also understand that the public needs to have confidence in its law enforcement officers. Law abiding public citizens should not have to fear their own police force. When law enforcement officers "go too far", it impairs the ability of all other officers on the force in their ability to do their job. When you are in a job that serves the public, you need to be accountable to that public. You may not like it, but that's part of the job.

According to another recent article in the Savannah Morning News, "Tybee Police Learn About Autism", the two police officers that arrested Clifford, as well as a jailer, have both resigned their posts. The police chief has been suspended, and officers are now being sent for training on dealing with people with autism.

My hat is off to the city of Tybee, for stepping up and doing the right thing. Nothing will undo the damage that has been done. Clifford will forever more be afraid of the police, and it will be that much harder for him to react calmly the next time he interacts with them. But it looks as if the city is stepping up, doing what it can to prevent future similar occurrences, and weeding out a few bad apples (while sending an important message to the rest of the department).

I don't know if the police chief will keep his job, or if he should. I am not in a position to know what he knew, when he knew it, and what he has done in the interim. But I trust now that the people of Tybee will do the right thing, because of what they've done thus far. And if he does keep his job, I sincerely hope that he issues a much more heartfelt and all encompassing apology to Clifford and his family, for them having to have endured this.

An Inconvenient Truth

2010-06-08T05:02:00.000+01:00

photo credit-newagecrap
creative commons license

Unfortunately, one of the things that has become obvious to me over the years is that the general public doesn't have a clue what it's like to raise a special needs kid, has no real desire to know what it takes, and when times are the least bit tough the public is especially willing to throw our kids under the bus if it will help their own situation in any way. This is true, whether it's a smaller, relatively well off district like the one we live in, or a large one such as Los Angeles.

One might expect that the Superintendent for one of the largest districts in the country would be a little savvy when it came to talking about how resources were allocated during an economic downturn, and would refrain from saying things that were just REALLY STUPID. When L.A. schools Supt. Ramon C. Cortines was talking about a school for the blind in the LA Unified School district he recently said,

"Some of those are very, very severe cases, but you have to look at it in perspective. When you fund some of the special ed things, you're taking from regular kids."

Aside from it being blatantly against the law for economic considerations to be driving who gets what services, there is the whole "attitude" thing. The attitude that says that special needs kids are not "regular" children. The subtext that assumes that they won't become productive members of society, so why invest any money in them. When such attitudes result in self fulfilling prophecies, they are felt to be proof positive that they were right all along. The attitude that while "regular" education is a right in this country, that special education is a privilege that can be easily revoked at the first sign of money trouble. The attitude that my kid (and millions like him) just aren't worth it.

I have found, as I stated, that such attitudes are not limited to uneducated or poor people. Indeed, my personal feeling is that such attitudes get worse, the higher up the socioeconomic scale one is on. It doesn't matter what overall political viewpoint you hold. Platitudes regarding equality rapidly fall apart when it comes to spending a dime on special needs education instead of the football team.

I don't know what the solution is. I'd like to think that the only solution is success. Being out there, in the public eye, as much as possible. Expose the public to successful former special ed. kids as much as possible, and eventually they'll change their mind. And holding them to the letter of the law until then.

Georgia Scores a Hat Trick

2010-05-26T02:57:00.006+01:00

photo credit-thebigo
creative commons license

In the game of hockey, a hat trick refers to when a single player scores three goals on the opposing team during the same game.

In the game of "how can we be the most discriminatory against autistics", the US state of Georgia has been in the news three times in the last two weeks. First it was charging a 14 year old autistic boy with felony terrorism charges for stick figure drawings he put on his homework. Then it was police using a taser on an 18 year old autistic young man who didn't answer their questions fast enough, and appeared different.

Today Georgia is in the news again, and again it's for tasing an autistic man. According to Fox News:

"Twenty-three-year-old D.J. Moran said multiple officers surrounded him, cuffed him on the ground and then tasered him, MyFoxAtlanta reports."

Of course, the multiple officers couldn't possibly handle this after they surrounded the man and were putting him on the ground, so they just had to taser him:

"Police officials released a statement saying, 'The officer used a taser when the suspect failed to cooperate by struggling and resisting, after being instructed to place his hands behind his back. The suspect only complied after the taser was used.' "

Fortunately, even though the police tried to cover themselves by charging the man with multiple felonies, a jury (who saw a police cruiser cam video of the event) saw things differently:

"Police charged Moran with multiple felonies, but a jury did not convict him."

So congratulations, Georgia! Guess I won't be spending any of my vacation dollars in your state this year.

Geogia-Zero Tolerance for Differences

2010-05-24T23:04:00.007+01:00

photo credit-centralasian
creative commons license

Evidently it's not safe to walk around (or sit) any place in Georgia while being autistic. At least not by yourself. Because if you do, you're fair game for being tased by the police. At least, that's what the police chief of Tybee Island, Georgia seems to think.

A little over a week ago, it was a 14 year old boy being arrested on felony terrorism charges for drawing threatening one inch stick figure drawings on his homework. Now it's an 18 year old autistic young man tasered after being confronted by police while he was sitting on the curb waiting for his brother and a friend to come out of a restaurant.

WMBF news reported yesterday on how 18 year old Clifford Grevemberg was waiting on the curb outside the Rock House Bar and Grill for his brother and a friend to come out, when he was approached by two policemen. According to the police report, Clifford was staggering while walking back and forth in front of the establishment, and when questioned, responded that he was waiting for his brother to come out with some food.

The police report said that one officer asked Clifford if he had been drinking, and he responded yes. Of course, they didn't ask him what he had been drinking. Unless he was asked if he had been drinking alcohol, my 10 year old son might have also responded in the affirmative, having drunken water, soda, or some other perfectly legal beverage. The officers then asked for identification (twice), and when Clifford turned and began to walk away, they grabbed his arm. Clifford, as might be expected, tried to retract his arm away from them, which gave these two police officers all the justification they thought they needed to taser him. Which they did while forcing Clifford to the ground, causing a bruised face and a broken tooth.

The Tybee police chief, in a statement given today, tried to explain away the incident by saying that Clifford gave the appearance of being intoxicated, and tasing him prevented further damage to both Clifford as well as the officers. He gave a backhanded apology, saying

"We are sincerely apologetic for the injuries suffered to Mr. Grevemberg. We are also sorry he was left unattended under the circumstances..."

In other words, if you are so brazen as to think that you have the right to walk or sit in a public place while being autistic (and you don't have an attendant immediately at your side), then you shouldn't complain when the police tase you and arrest you.

Terrorism? Really??? Or "Get Out of Our School!"

2010-05-15T05:30:00.004+01:00

If this wasn't so over the top ridiculous, it might be funny.

A 14 year old Georgia boy has been charged with a felony (making terrorist threats) for a small (about 1 inch high) set of stick figures he drew on a paper in class. The stick figures depict one figure (labeled "me") shooting another stick figure (labeled with his teacher's name).

There is no question that his drawing the picture was both inappropriate and wrong. There is also no question in my mind that the school's response is so wildly disproportionate as to make me question why they would do such a thing. There has been no allegation of the boy attacking his teacher, bringing a weapon to class, or even of having formed a definite plan as to how he would accomplish the task in his drawing. There has been no mention of the school consulting with anyone else (the boy's doctor, their own psychologists, the police) to evaluate the situation as to how likely it was for the boy to be able to carry out his threat, much less evaluate the seriousness of the situation.

Many people threaten to kill their spouses every day. They very seldom get arrested, much less charged with making "terrorist threats".

So why would a school do such a thing?

My guess (and it is a guess, as there's been no statement I've seen from the school) is that this charter school where the boy is enrolled wants to dump this "problem student" from their school, and that they are using this as a convenient excuse. Many charter schools don't want to spend the time and money it takes to properly educate children with special needs.

This could end up as a case of "zero tolerance" gone wild, but I suspect that, in the end, the school will come up with some "compromise" that will entail dropping or lessening the charge, as long as the boy withdraws from the school (or accepts another placement they have suggested).

Walking While Black and Autistic

2010-03-26T05:29:00.000Z

The phrase "Driving While Black" is one that is familiar to every African-American in the U.S., and refers to the practice of African Americans (especially young black males) being singled out by the police for "special treatment" when they are driving. Otherwise known as racial profiling, through either upbringing or isolated experiences many police officers come to unfairly believe that the majority of blacks must be up to no good, and thus deserve to be singled out for closer scrutiny, and assumed to be hostile until proven otherwise.

Steven Eugene Washington, a 27 year old black man who reportedly had never had a run in with the law, was shot dead while walking to a friend's house the other night in Los Angeles. When he was reportedly approached for "acting suspiciously", he reportedly

"...did not comply with their investigative demands and appeared to be reaching into his waistband. Fearing he was reaching for a weapon each officer fired once. One bullet struck Washington in the head."

While the LAPD gives its officers a one hour course in dealing with autistic individuals, the department could not say whether the officers who shot Washington had taken the course.

My ten year old bi-racial son had a large birthfather. He will be a big man. This scenario is one of my greatest fears.

I ache for the Washington family tonight, and long for a world where more than one hour is spent training first responders.

Temple Grandin BBC Documentary

2010-02-17T21:08:00.000Z

Lately many people have been commenting on the HBO Temple Grandin movie that was just released. I watched the movie this last week with my family. Overall, I would say that it was pretty good. I don't expect Hollywood to get many things right, but I'd say they did a pretty fair job with this treatment. Claire Danes did a much better job than I expected. I feared before seeing it that she was much too "glamorous" for the role, but she did a good job of capturing the general tone, and playing things pretty straight.

Here's the trailer from the HBO movie:

Trailer

Buddy Boy told me several years ago that his mind was like "a video camera. I can just hit rewind, and see things over again." He had never heard of Temple Grandin at the time. After seeing the movie, he asked if I thought Temple could teach him to think in pictures. The HBO movie presented it as Temple thinking in black and white still pictures. I guess he saw this as fundamentally different from his thinking like there's a video recorder running in his head. I told him she probably couldn't teach him to think in pictures, as everyone pretty much thought the way they thought.

For those who have access to HBO in the states, I think it's definitely worth a watch if you have time. For those without HBO access, I'm sure it will be out on DVD soon.

Also, on a local list I'm on, someone sent me the links to a nice BBC documentary on Dr. Grandin on YouTube. You can see it here:

Part 1:
http://www.youtube.com/watch?v=46ycu3JFRrA&feature=related

Part 2:

http://www.youtube.com/watch?v=f-iy7GNsmm0&feature=related

Part 3:

http://www.youtube.com/watch?v=QDWH_Sfnoc0&feature=related

Part 4:

http://www.youtube.com/watch?v=Epwa0zQ8jx8&feature=related

Part 5:

http://www.youtube.com/watch?v=aidkSBsyDlA&feature=related

Murphy's Law

2010-01-25T02:20:00.003Z

Anyone that has children is very familiar with Murphy's Law, commonly stated as "Anything that can go wrong, will go wrong".

This morning, Buddy Boy started spinning around the kitchen, while holding his bowl of broccoli (yes, Liz gets both kids to eat vegetables and protein for breakfast).

So Buddy Boy is happily spinning away, saying (while broccoli is flying from the bowl) "Look, it's Centrifugal Force! It's one of Murphy's Laws."

Liz and I both got a big kick out of that.

In the same vein of humor, here is a Rhett and Link YouTube video entitled "The Perfect Bathroom Trip". We showed it to both of the kids today. Our grammar school nurse is planning on showing it to the kids in school.

The Nail That Sticks Up...

2010-01-16T04:31:00.003Z

Will Be Hammered Down.

So goes an old Japanese saying, meant to illustrate (as well as inculcate) a sense of conformity among the Japanese people. Westerners (especially Americans) are supposed to place much more value on non-conformity and individuality.

But that idea only goes so far, and is noticably absent in the American public school system. When it comes to school kids, conformity is king. And if you step out of line, you will be hammered down, sometimes quite forcefully.

Nowhere is this more evident then when it comes to kids with disabilities, especially those on the autism spectrum. Often, kids on the spectrum have various sensory processing difficulties, and may also persevorate on certain things. When they run into difficulty, they can get emotionally "wound up" fairly quickly, and appear to be "acting out" and being volitionally bad. When given a little extra time and understanding, their behavior is most often a slight inconvenience to those around them, and at worst a slight nuisance. But when those around them insist on total conformity, and react by touching the person and physically restraining them, then the autistic person (like most people physically restrained for reasons they don't understand at the time would) react with a "fight or flight" type of syndrome and lash out at those restraining them.

Google the words "child autism arrested", and you quickly are faced with several stories over several years that seem to follow the same script: A child on the autism spectrum is placed in a regular classroom (often with a history of the family fighting for more support than what is being provided), said child "acts up" a bit (involving no or minor physical interaction with staff or other children), teacher reacts by physically restraining child, child "lashes out" (by kicking, pinching, biting), police are called, and child is arrested. There is often no behavioral plan in place to deal with the child's behavioral difficulties, and if there is a plan, it is often not followed. Children as young as 5 years old have been placed in handcuffs and arrested. Others who are slightly older are not only arrested, but sometimes thrown in psychiatric institutions or jail.

Such is the case with Zakh Price, age 11 (his picture's at the top), who was arrested and charged with a felony. Click Zakh's name to read Emily's excellent investigative piece into this latest travesty of justice. Another article detailing the facts can be found here. And Emily's follow up piece detailing some of the personal attacks made against Zakh and his grandmother can be found here.

This story rings all too true to me. My son is in fourth grade, and while the police have not been called on him (yet), the school district had threatened to do that in the past, when he was 5 years old. That period of time resulted in a short detour to a class for emotionally disturbed children, LOTS of meetings (with their lawyers, our advocates, and our lawyer), and a bunch of money payed out in legal and consulting fees. I was fortunate to be blessed with coworkers that allowed me flexible time off to go to all the meetings, as well as a job that pays well enough for us to afford the bills that came with this.

Zakh is lucky to have his grandmother, Carole Reynolds, who is a staunch advocate for him. Unfortunately, Carole is tapped out of the kind of money that legal representation requires, and she needs some help.

The Autistic Self Advocacy Network (ASAN) has issued an action alert, which lists e-mail addresses and phone numbers you can call to register your concerns. A website set up to take donations for Zakh's legal bills has also been set up for him.

I admit that I don't usually donate to online causes. Not only are there so many of them, but it's often difficult to discern which are legitimate, and which are scams. ASAN is a legitimate organization (Its president, Ari Ne'eman, has been nominated to be on an advisory council to the President of the United States), and Emily is a top notch, ethical person who's truthfulness and judgement I totally trust.

So I'm asking you to do what I did. Go to the website, click on the "Chip In" button, and give what you can. Even if it's 1,5, 10, or 20 dollars, everything will help. And keep this family in your prayers.

Unfortunately this story is not unique. But it does seem to be much more common for school districts to try to get out of paying for proper supports for children with disabilities by dumping them into the legal system. Perhaps there is also an attempt to silence those who would have the temerity to ask for support that the system is not willing to provide. Perhaps such prosecutions are meant to silence those voices before they even speak up.

Let the people in Fort Smith, Arkansas know that treating an 11 year old with a disability this way is unacceptable. Support Carole Reynolds as she supports Zakh. Go to the website. Make that donation.

Now, before it's too late.

Sleep

2009-12-11T02:56:00.002Z

photo credit-Jun's World
Creative Commons license

Sleep.

One of the most common, natural things there is. Most of us never think about it much at all, until we (or someone close to us) has problems related to it. There are a multitude of disorders that can affect our sleep. Insomnia, sleep apnea (central or obstructive), narcolepsy, sleep paralysis, sleep walking, night terrors, etc. You get the idea. Sleep disorders of one sort or the other seem to be a lot more common in those on the autism spectrum.

Buddy Boy has never seemed to require (or want) the same amount of sleep that most kids his age get. We've tried regular routines, music, melatonin, night lights, and various other meds to try to get him to sleep thru the night. We've gotten to the point where he'll go to bed at a predictable time (8:30-9:00 pm-not bad for an almost 10 year old), and usually sleeps until 6:00 am, though sometimes he's up at 2:00 or 4:00, and stays up for the day after that. We're fairly accustomed to his routine. That's not the problem.

Sweet Pea, his 7 1/2 year old sister, has been having sleep related problems since August. At first it was her getting up every night screaming. When we'd come into the room, she'd complain that her stomach was hurting. Mostly it was an epigastric centered pain, and only occurred at night. When she woke in the morning, she still complained of stomach pain, and her diet (which Liz had pretty full of good things-protein, vegetables, fruit), devolved to milk, cheerios, and cheese. Everything else hurt to eat (according to her).

At first I felt it was most likely related to anxiety regarding school starting up (Sweet Pea is a fairly high anxiety kind of kid) and hoped that by not paying too much attention to it it would go away. Well, Sweet Pea got into the swing of school, liked school, and it didn't go away. I took her to a pediatric GI doctor near the end of September, after starting her on some Prilosec (Sweet Pea had reflux pretty bad as an infant, and I thought it reasonable that perhaps it had recurred). The GI doctor agreed, and she is now on daily Prilosec. The stomach aches have "mostly" gone away (though not completely-when she was an infant putting her on Prilosec changed her in 48 hours from a miserable baby who cried every night for three months straight to a happy, smiling kid). Her diet, now that she's on the Prilosec, has once again normalized.

Sweet Pea continued to wake up most nights, sometimes screaming, sometimes coming in to wake us up. Most nights it's sometime between 1:00 and 3:00 am. Although it's somewhat disruptive to me, it's majorly disruptive to Liz, who often can't get back to sleep (internship was good training for me). For the last several weeks Liz has been sleeping downstairs in the family room, so as to try to get some sleep. She also has not been very happy. :(

Sweet Pea's pediatrician has prescribed a mild anti-anxiety agent, which has helped some, but not completely. Instead of 5-6 nights out of 7, we're down to 2-3 nights out of 7. Not even paying her 25 cents to not wake us has helped (Sweet Pea will make lots of money when she grows up-she is very focused on making money-to the point that I constantly remind her of all the other really important things out there that are more important).

We, being experts in sleep as much as anyone out there, have tried as many different things as we could think of. I'm not really looking for any new ideas, just venting a bit, I guess.

And dreaming of the day when both kids will sleep through the night.

Wow! The Trib Gets It Right

2009-11-24T06:04:00.001Z

photo credit-Todd Baker
Creative Commons license

Almost exactly two years ago I wrote two posts regarding how the Chicago Tribune was allowing non-factual gibberish to be published under its masthead thru the online in house blog of Julie Deardorff, and how it was abdicating its journalistic responsibility. I was afraid at the time that this was to be indicative of what would pass for "investigative journalism" at mainstream, formerly powerhouse, papers (and other media outlets).

I am happy to say that I was wrong.

In May the Tribune published very good investigative pieces on Dr. Mark and David Geier, as well as a local Chicago quack by the name of Dr. Mayer Eisenstein.

Now this month there are two more articles on autism and quackery, detailing how risky therapies have little basis in science, and how legitimate researchers have seen their findings twisted by those who would fleece money from unsuspecting parents.

All of these recent articles are the product of reporters Trine Tsouderos and Patricia Callahan.

I must say that I am impressed with the quality and consistency of these articles. No false balancing of legitimate science with BS pseudoscience. No confusing association of two events with causation. Just a thorough investigation of the underlying science, and painstaking digging through all of the "scientific sounding" but totally bogus claims of those out there that would fleece desperate parents out of their time and money.

If these two reporters keep up such great work, we just might see the rise of mainstream newspapers again.

Stars and Rain

2009-10-29T03:42:00.003Z

I recently had occasion to visit China (I was invited to give a couple of lectures there), and took the opportunity to arrange a visit to a school for autistic children, Stars and Rain. Strictly speaking, Stars and Rain isn't so much a school for autistics as much as it is a school for their parents, who come (with their children) for 12 week courses in how to educate their child. There are very few resources for either diagnosis or treatment of autism in China, and Stars and Rain may have been the first school in China for autistics and their parents.

The first person I met when I got there was the Development Officer, Sun Zhong Kai (Scott), who was the person I had corresponded with via e-mail. I had asked a couple of times via e-mail if my visit would be too disruptive, and Scott said that it would be OK. This gave me my first positive impression of the school, as it was more open to visitors than my kids' own school. The second positive impression I got was when I asked if I could take pictures, and he indicated that it would be fine, as long as I didn't take any that showed the children's faces (as the school liked to respect their privacy). A school that was open, and respectful. Not bad, for the first 5 minutes.

Scott's background is that he was one of the first social workers trained in his university in Beijing. He seemed very knowledgeable regarding autism, and had a very upbeat and friendly attitude. He immediately put me at ease. His English skills far surpassed my limited Mandarin, and we communicated just fine, despite the fact that due to a mixup I was without a translator for this trip.

Scott took me on a tour of the facilities, which consisted of about 10 different rooms in a basic but clean building. The teachers (I saw about a dozen of them) were very friendly and energetic. There were also a number of college age volunteers that assisted during the day. The students range in age from 3-12 years of age, though most in this group seemed to be from the younger part of that age range.

Although the school says on its website that they teach using ABA, they only use positive reinforcement, and from walking around and observing, it seemed a fairly loose mish-mosh of ABA, TEACCH, and good old-fashioned one on one instruction. Scott stressed to me that part of Stars and Rain's goal is to change attitudes in China towards autistics. He related that for the first time, the government recently recognized autism as a disability, and provides individuals a (very small) monthly stipend.

Stars and Rain was started in 1993 by the mother of an autistic child, Tian Huiping, with a couple of other parent volunteers and pre-school teachers who had never heard of autism before. Initially it was a residential school for six children, who stayed at the school from Monday-Saturday, then went home for the weekend. As demand was very high (and they lost space where they could stay overnight) the school decided to leverage what expertise it had, and transformed itself into a school where they taught the parents (accompanied by their children) how to educate their children themselves at home. Terms run for three months, with 50 families attending each session.

The school has had visits from some US special ed teachers, and they have associated loosely with the Heartspring organization out of Kansas, USA.

Besides the parent/child instruction, Stars and Rain also runs what Scott described as a "demonstration project", a residential home for six adolescent-adult autistics. This facility is located a couple of blocks from the school. There are about 8 staff that work in that facility, including 3 long term university volunteers (who were from Germany and Indonesia). Education there is focused on daily living skills. The residents go out and about in the community with the staff, and Scott reports that finally, in this location, they have built up a good rapport with the community which supports their presence (this is the school's third location).

All in all, I was mostly pleased with my visit. Although they call themselves ABA based, what I saw was not the strict ABA that makes my skin crawl, but rather a much looser version that seemed to go with the flow of where the individual children were at. The staff is friendly, dedicated, and seems to work very hard. The facilities, although basic by Western standards, were quite adequate, and kept very clean.

Whenever I feel disappointed about services that Buddy Boy isn't getting, or about problems we have, I will always now know that things could be a lot worse. Stars and Rain is doing good work, but because of their limited resources they are limited in how many people they are able to help. They have a waiting list of about two years for their courses at the present time. I encourage anyone who wants to donate to them to send them a little cash via this page. You have to do a bank transfer, but it's not that hard.

Dear Mr. Springsteen

2009-09-27T19:48:00.005+01:00

photo credit-uchiuska
creative commons license

Below is the letter that I just e-mailed to Bruce Springsteen's publicist at mlaverty@shorefire.com . I encourage others to also write him and express your opinions.

------------------------------------------

Dear Mr. Springsteen,

I am writing you regarding your upcoming concert that you are doing in conjunction with Autism Speaks.

I have been a great fan of yours for years, and must admit that I got a little teary eyed when I read a story of how your music helped an autistic child learn to talk. My own son (who is autistic) also went through a stage where he sang a lot of songs (and bits from songs) instead of talking in the usual fashion. I would have much preferred that he used “Born to Run” instead of songs he heard on “Barney”.

I am sure that by now you are aware of the controversy regarding the organization Autism Speaks within the autism community. Not only do many parents of autistic children object to the way that Autism Speaks portrays those with autism, but more importantly those who are actually on the autism spectrum object to how they are portrayed.

Although I don’t know you, I sense from your music that you understand the underdog and the downtrodden in life. Unfortunately, many autistics in society are bullied and abused, sometimes by the very people that are supposed to be helping them.

The objections to the way Autism Speaks treats autistic individuals most recently revolve around a video that they released, but go deeper than that. Autism Speaks, in attempting to “raise awareness”, as well as funds for research on autism, has been consistent in using language that is not only disrespectful towards autistic individuals, but also absolutely false in many instances. Those with autism have not been kidnapped or stolen, and are not monsters. Autism is not a fatal disease, and thus should not be compared to cancer or AIDS. Finally, Autism Speaks is perhaps the only major organization that purports to represent disabled individuals that refuses to include those with the disability on their board.

This is not to say that those with autism don’t have challenges, or that parenting those on the autism spectrum is a piece of cake. But much of the challenge comes from living in a society that discriminates against those with disabilities, and lacks a true understanding of what those individuals actually require in regards to accommodations.

I ask that you reconsider your association with Autism Speaks, as that organization neither represents either autistic individuals themselves nor contributes to their welfare. Instead, this organization denigrates those on the spectrum. I just don’t see you as the type of person that would want to be associated with such an organization.

Regards,

Joe xxxxxxxxxxx

--------------------------------

Edit-If there is one post that Mr. Springsteen should read, it is the one put up by Bev over at Asperger Square 8. Go read it here. Bev's post is the most elegant and powerful one I've seen on this thus far.

When Will They Listen?

2009-09-23T04:06:00.005+01:00

One would have had to have been living in a cave in the greater disability community two years ago not to have noticed the Ransom Notes Campaign and the furor that followed it. In that campaign the NYU Child Study Center put out an ad campaign that implied that autistic individuals (as well as those with a number of other conditions) had been kidnapped. This imagery was (not surprisingly) extremely offensive to many in the greater disability community. After an intense counter campaign by disability advocacy groups, including ASAN, the Ransom Notes Campaign was stopped.

The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc.

And as pointed out over at "Cat in a Dog's World", perhaps the worst part about it was that they used video sent in by autistic families while they had their doom and gloom voiceover.

Two years ago the NYU CSC claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media.

I wonder what excuse Autism Speaks can possibly come up with this time.

But At Least It Would Be a Graceful Death

2009-09-22T01:50:00.004+01:00

photo credit-mcveja
creative commons license

Sweet Pea tends to worry about the future. She'll come up with all sorts of things to worry about. Usually these are easily countered, and she is (temporarily) reassured. It's gotten that many of the same things come up over and over again, so I've developed almost automatic responses:

"What if I don't like the job I get when I grow up?"
"Then you'll get another. I had a lot of different jobs before the one I have now".

"What if a bad person breaks in our house and kidnaps me?"
"The doors and windows are all locked. And the police drive around all the time looking for bad people".

"What if you die?"
"I'm not planning on dieing for a long time".

"What if there's a tornado and it knocks the house down?"
"This house has been here for over 100 years, and nothing has knocked it down yet. Mommy and I and this house will protect you".

But the other night she threw me off for a second. She came up with:

"But what if I get sick?"
"What do you mean, Sweet Pea?"

"What if I get sick and die from the Swan Flu?"

One part of me cringed a little inside. I shared this irrational fear, that this flu season would be one for the record books. That there would not be enough vaccine in time. One of her classmates already had a case. A grandchild of a co-worker is currently ill with it. One of our doctors got it last fall from a patient. What if I caught if from a patient and infected one or both of our kids? Of course I know that even if they get it, that they probably won't die. They'll probably be enough anti-viral medicines around to treat them. Probably.

Of course another part of me wanted to laugh out loud at the "swan" thing. Buddy Boy immediately chimed in,

"It's the SWINE flu. SWINE flu! You know, pigs!"

I then hugged her, and told her we'd just have to get her some medicine for that, if she got sick.

We actively try not to have the news on the TV, as there's seldom anything good on, and you'd think that every other child in the county had been kidnapped for all the coverage kidnappings get. But somehow the world creeps in, no matter what we do. And the media magnify our little fears, irrational though they be.

Dogged Perseverence

2009-09-18T03:22:00.005+01:00

Some people may remember the story of the 5 year old Columbia, Il boy who had a service dog prescribed for him by his doctor, and had to fight a court battle in order to have the right to take the dog to his school. The Kalbfleisch family won a court order to have the dog allowed to accompany their son to school, after spending about $50,000 on attorney's fees fighting the school district, and another $10,000 for training the dog, which was trained by Wilderwood Service Dogs of Tennessee.

The school district, which originally was willing to let Carter Kalbfleisch attend his home school, suddenly decided that the dog was not welcome. So the school quickly called an IEP meeting, passed an IEP without the dog being necessary mentioned in it, and insisted that placement be in a special autism specific school, rather than Carter's home school. The Carter's are going along with this placement for now, in order to get their son into school. But they are continuing to fight to get him placed back in their home school.

"I think it’s important for him to be in his own community with his local peers for him to look up to," said Kalbfleisch. "It’s very important for autistic kids for their communication skills and, later on in life, to get them interacting with people and into the real world."

It never ceases to amaze me the lengths (and expense!) that a school district will go to in order to fight a parent. When someone in the school district decides that they don't want someone in their school, they seem to have no qualms about spending obscene amounts of the taxpayer's money to fight individuals. In this case, the Kalbfleisch's have spent $50,000 so far. Further appeals will certainly take at least $10-$20K more. If the family has spent that much, the school district has spent at least the same (and probably more, as they often put multiple lawyers against the single one that the family provides). The special school that they are sending Carter to costs about $24K more than his usual school/year. So figuring conservatively, the school district has been willing to spend $85,000-$95,000 this year alone just to keep one service dog out of a classroom, with an additional $24,000 every year to keep him out.

It looks like a friend is going to be facing a similar fight against a school district, which has decided that it'll keep making the environment worse in order to force a child out of the family's preferred placement (their home school), in order to place him where he can be warehoused. Please drop by Kristina's temporary digs and lend a little moral support.

I've never met anyone quite so doggedly persistent as Kristina, and I know that she'll give this district a run for their money.

All You Need Is...

2009-09-16T17:57:00.004+01:00

The above message was slipped under the bathroom door this morning by my daughter, Sweet Pea, while I was shaving. She usually isn't up that early, so it was a bit of a surprise. When I had finished I opened the door, and she gave me a great big hug and told me I was the best daddy in the whole wide world.

Not a bad way to start your day.

I once read a definition of a daughter as "The one woman in your life who will love you totally and not try to change you." I can kind of understand that.

Of course, this is the same daughter who over the weekend, after being called out for taunting her brother, was crying and yelling at us at the top of her lungs "I hate you. You don't love me. You always yell at me. I'm going to leave and find new parents who will love me." (Note-she defines "yelling at her" as any comment that uses even a slightly disapproving tone of voice)

I think I'm going to have to "store" the memory of days like this, to get me through her puberty.

Liverpool-More than the Beatles

2009-09-09T23:26:00.003+01:00

photo credit-jcesar
creative commons license

As most fans of the "Fab Four" know, today a digitally remastered collection of Beatles songs was released.

As most are surely aware, the group got their start playing in pubs in Liverpool. But what I really want to talk about today is something else that Liverpool may become famous for-The Liverpool Care Pathway. I bring this up to illustrate what I believe is one of the major ways that government directed/socialized medicine is potentially life threatening to those with disabilities.

Basically, the Liverpool Care Pathway (LCP) is a standardized method of dealing with people that are expected to die soon in the UK. It is a standardized treatment method that has been vetted by a panel of "experts" to improve how one dies in the UK. On its surface, there is much to recommend it. Rather than be hooked up to machines one doesn't want and subjected to procedures that have little probability of success, it is much preferable to die in relative peace. I have often advocated for patients to have the right to say what they want, and have had many "difficult conversations" with patients regarding what kinds of interventions they wanted if they became unable to communicate. But it appears that the LCP goes way beyond advocating for and implementing patients' wishes. Combined with the Mental Capacity Act of 2005, which gives doctors the ultimate decision making authority when they judge patients unable to make their own decisions, the LCP allows patients to have fluids withheld and deep sedation given IV until they die. Once doctors decide that you fulfill entry into the LCP, one's death becomes a self-fulfilling prophecy, as the deep sedation masks any indication that you are improving.

The LCP was initially used for people with terminal cancer, but its use has expanded to patients with other conditions, such as after a stroke. As this presentation shows, all you need to be entered into the pathway is to be hospitalized for 48 hours, and two of the following conditions present:

"- bed bound
- semi-comatose
- only able to take sips of fluids
- no longer able to take tablets"

It doesn't take a rocket scientist to see that many people with disabilities might enter the hospital with at least one strike against them. And combined with the general attitudes towards the elderly and disabled in healthcare settings, it isn't hard to see how some people feel that they need to rescue their loved ones from the LCP. As noted in some of the articles I linked, it doesn't matter if your friends and family disagree. Family members have been threatened with arrest for feeding their family member once they were put on the LCP fast track to death pathway.

But why bring this up now? Why don't I, living across the pond, just MYOB (mind my own business)? Because of course tonight is the night that President Obama makes his pitch to push the current health care bill that is before Congress. While I freely admit that there are many things that need to be fixed (including access and cost issues), I heartily disagree with the Utilitarian approach that government provided healthcare provides. If there is going to be rationing (and basically all forms of healthcare provision involve some rationing at some point), I want to have the decision making capacity of what is provided, not have it be the decision of some anonymous government committee.

As others have noted, the healthcare bill under consideration creates 52 new government organizations, including an independent advisory council on what are best medical practices. Dr. Ezekiel Emanuel (Presidential adviser and brother to Whitehouse Chief of Staff Rahm Emanuel) has written:

"Substantively, it suggests services that promote the continuation of the polity—those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citizens in public deliberations—are to be socially guaranteed as basic. Covering services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic, and should not be guaranteed. An obvious example is not guaranteeing health services to patients with dementia."

Emanuel sees a world where "the community" comes first, and individuals are only judged worthy of expenditure if they have value to the community (with not even a nod to the intrinsic value of all human life).

So as you listen to the speech tonight, know what the President's adviser on healthcare is telling him, and what this bill before Congress will result in. Don't think that you'll get healthcare reform passed now, and worry about the details later. If you happen to get sick, there just might not be any later for you.

What an Autism Organization Should Be?

2009-08-26T01:12:00.001+01:00

Sullivan, over on LBRB, recently blogged about a new program targeting autistic adults at Boston's MGH hospital. This program has been made possible by a generous endowment from the Nancy Lurie Marks Family Foundation. According to the article,

Her (Nancy Lurie Marks) gift to Mass. General will pay for a range of new specialists and programs, including an electronic patient data repository for research, adult neurologists, social workers to help adults find work and housing, and a communication program to evaluate children and adults for devices such as computers that produce speech when a patient types on a keyboard. Bauman, who founded the hospital’s multidisciplinary LADDERS program for children with autism, will become the MGH Distinguished Scholar in Autism, an endowed position, as part of the gift.

I had never heard of this foundation before, so I went to their website. There I found that the organization had been around since 1977, and according to the "About NLMF" section,

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

When they're not supporting research and services to autistic individuals, the foundation has also sponsored documentaries such as "Autism is a World" and "Voices of Vision: Quality of Life for People with Disabilities: Equity, Opportunity and Inclusion".

Now, this organization probably isn't perfect. Not everyone would be in favor of everything they do. Some of their research money supports genetic investigations, and some of their money has gone to support investigations using ABA type therapy. But in going through their website, what is notable is what is NOT there. No movies moaning how horrible living with someone with autism is. And no hedging regarding vaccines, mercury, or whatever other voodoo people want to ascribe autism to.

In fact, the overall impression I get from reading through the Nancy Lurie Marks Family Foundation website is that we've regressed as a society since 1977. Because evidently back then people set up foundations that respected individuals and wanted to work to help them succeed, as opposed to more recent times when people set up organizations to create "awareness" of how miserable autistics' lives are, and to support all of the non-scientific voodoo out there to "cure" autism.

A Quick Resolution

2009-08-16T22:02:00.007+01:00

photo credit-David Spender
creative commons license

After a letter was sent by ASAN (as well as many of you, I'm sure), the York, PA chapter of ASA sent the following reply, in which they detail how they are going to immediately remove the billboards.

We all make mistakes, and it's often difficult to admit when we've made them. I applaud the York, PA chapter of ASA for its quick and reasonable response. I believe them when they say they meant no harm, and salute them for being open to considering other voices from the "family."

----------------------------------

Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,

Amy Wallace

President ASA York

----------------------------------

And here is ASAN's announcement regarding this:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community's reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York's President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

The Letter I've Written

2009-08-16T03:46:00.002+01:00

photo credit-JasonRogersFooDogGiraffeBee's photostream
creative commons license

I know that in one sense, the York, PA ASA billboards that I wrote about in my last post pale in comparison to the ad campaign wrought by the NYU CSC in 2007. But that still doesn't mean that I can't attempt to change what I consider to be an insult to my son, as well as other autistic people.

So here is the text of the letter that I sent today:

--------------------------------------------------------

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

-------------------------------------------------------

As ABFH was kind enough to point out, the address of the York, PA ASA chapter is:

pa-york@autismsocietyofamerica.org

And the contact person is Amy Wallace.

Could We Have A Little Originality, Please?

2009-08-14T03:44:00.009+01:00

So, we're driving through Lancaster County, PA looking for our motel, and Liz says "I thought they got rid of those signs."

I look up to see the above billboard, and instantly realize that although similar in tone to the famed Ransom Notes campaign, was not part of it. After verifying that the kids are both engrossed in watching something on the DVD (I'd really rather NOT have them exposed to such trash), I pulled over to snap a picture.

"No, I explained to Liz, it appears to be a cheap knock-off of that other campaign."

Whether the York, PA ASA is trying to piggy back on what they perceived as a successful campaign, or whether they're just ignorant and the whole "kidnapped/changeling/this isn't my child" thing just resonates with them, I just wish they'd show a little originality, and spend the time to create more original demeaning signs.

My son deserves better than re-hashed crap.

"You'll Always Know Your Cow"

2009-08-03T05:46:00.004+01:00

One of our stops on this trip has been to see the Erie Canal, and take a little boat ride on it.

Liz made up this amazing booklet for each of the kids on this trip. She got clip art from various places, pictures of things we were going to visit, and little blurbs that she put together so that the kids could read a bit about what we were going to do before we got there. She made sure that the stuff she wrote was age appropriate, as well as short enough to be interesting. Liz also left some blank pages for the kids to draw or paste souvenirs in. I was pretty impressed.

Liz also read a lot of stories with the kids before we left that dealt with where we were going. As well as rounded out her "priming" of them with a few multi-media presentations (songs and videos).

One of her songs that she was playing for them before we left was "The Erie Canal". Rather than just reciting to them when it was built, how long it was, who was Governor when it was built, etc., she really did a pretty good job of making this stuff interesting. We talked about locks, how they worked, the importance to river traffic to trade in the 1800's, etc.

When we got close to the canal, we were singing the song, and we realized that Buddy Boy had gotten one of the words wrong. We've all done this at one time or another (some of us more often than not), so it was no big thing. But he insisted for the longest time that his version was right, and he didn't want to change it.

The original chorus goes:

Low bridge, everybody down
Low bridge for we're coming to a town
And you'll always know your neighbor,
you'll always know your pal
If you've ever navigated on the Erie Canal.

Well, Buddy Boy insisted the third line was:

And you'll always know your neighbor,
you'll always know your ~~pal~~ cow

Given that he still talks about wanting to be a farmer, I guess it's good to "always know your cow".

The song can be heard here.

When Did Niagra Falls Get So Tacky?

2009-08-01T05:32:00.003+01:00

So, our first stop on our family vacation extravaganza this year was Niagara Falls. I have been there 2 or 3 times in the past, but not for at least a decade. And I don't think I've been on the Canada side of the falls for at least 30 years.

I was surprised both by how expensive everything was on the Canadian side of the falls, as well as how tacky. Now don't get me wrong. The falls themselves are beautiful (breathtaking, really), and the view from the Canadian side is better than from the US side. But I'm still left wondering whether if it was worth it to go, as the place left somewhat of a bad taste in our mouths.

This is what we expected (and got!):

The falls are a natural wonder, and the "Maid of the Mist" boat ride is worth it, as they get you right up close to the falls.

But the town is tacky to the nth degree

with Ripley's right next to Frankenstein, next to a horror show, next to a Rock and Roll Wax museum, tacky souvenir shop, etc. People smoking everywhere (not just the tourists, but a much greater percentage of the locals then I would have expected-I thought Canadians were supposed to be much more progressive. I guess they're just more "European" in this respect).

The hotel we stayed at was expensive, and looked like it had been built in the 1970's, with furniture updated once in the 1980's. The cleanliness was barely passable, the wi-fi didn't work in the room (only in the lobby, though they expressed surprise that it didn't work in the room-a night clerk said it never worked in our room). One of the mattresses creaked and was lumpier than our 25 year old sleeper sofa at home.

Food cost about 80% more, even after adjusting for the exchange rate (ham, mushroom, and cheese omelette at a Perkins restaurant- $8.49 in the states, $14.98 in Canada. Other stuff even more outrageous). You would think that the town would look really good, with the prices being charged. But other than some nice buildings right near the river, the rest of the town is rather shabby looking.

It took us almost 3 hours to clear Canadian customs, and we weren't even singled out for special inspection. The lines were just that long. Buddy Boy was waxing poetic in the back seat about what the customs agents might be looking for while we were waiting (bombs, explosives, and terrorists). Luckily, we persuaded him to clam up while we passed thru the line.

Even though the streets were packed, we were told that tourism is off this year due to the economy. The Canadian people were nicer than most tourist dependent townsfolk. I think I would be surly if I lived in a town where people tramped thru my front yard every day and asked stupid questions. One store clerk thanked me for being polite (and I wasn't even trying to be-I can't imagine what she has to put up with on a daily basis).

After a couple days of seeing the falls and the surrounding area, we were off to mid-southern Pennsylvania, where we spent the next few days. Fortunately, we got thru customs going back in about a half hour.

All in all, I still would go back to Niagara Falls and the Canadian side. It's just a shame that such a naturally beautiful place has been degraded by such a tacky town.

Missed Signals

2009-07-26T05:26:00.001+01:00

photo credit-atomicshark
creative commons license

Well, we're off, on what promises to be a great vacation (holiday). We had a mostly good day, with but a small (but typical) interchange at the motel pool after we checked in.

The pool was packed, and noisy. There were kids everywhere. Buddy Boy and Sweet Pea jumped right in, swam around some, and seemed to be having fun.

As I was watching Buddy Boy, he approached a group of kids at one end of the pool. It was apparent that they all knew each other, and were goofing around with each other a bit. Buddy Boy pretty much just inserted himself in the middle of the group and tried to start interacting with them. I couldn't hear what was being said, but then it appeared that (perhaps) they were engaging him and including him in their goofing around. Then I noticed a bit of shoving going on, and the next thing I know Buddy Boy's being shoved a bit forcefully by one of the kids. It turns out that after getting pushed lightly a bit, Buddy Boy kicked him in the groin below the surface of the water. I guess I'd be upset, too. By this time I could tell that something was definitely wrong, and Liz started towards that end of the pool to see what was up (I asked Liz to go, because there were a group of mothers down there, and I thought that perhaps a female touch would go over better than me going down there). Before she gets there the mom of the other boy is pointing at Buddy Boy and shouting that Buddy Boy kicked her son in his private parts (and of course the pool gets pretty quiet, and everyone turns to pay attention).

Buddy Boy, having been shoved a bit hard, comes out of the pool crying loudly. So now the other mother is starting to shout, and Buddy Boy is getting louder. Liz pulled the "A" card (you know, sometimes my son overreacts a little, he's autistic).

Amazingly, it worked. The other mother abruptly stopped, said she understood, and sat back down. We quieted Buddy Boy down, and the kids got back to playing in the water.

Liz says that this incident was pretty typical for Buddy Boy, when he doesn't have someone right by his side facilitating his interactions and intervening. I must admit that I haven't seen things escalate so quickly in the past (okay, maybe I have selective memory), but she sees him more at school, and interacts with his teachers more. Evidently stuff like this happens during recess at school on a fairly regular basis.

Liz and I talked, and we think it's because he just can't read the situation. He doesn't understand how groups of kids that already know each other don't necessarily want someone else to insert themselves into their group. He doesn't get their signals when they tell him to nicely get lost. He doesn't know the difference between gentle playfulness between close friends, and him being a stranger pushing just "that" much harder than they are (which then sets them off, to his surprise and dismay, which escalates his response).

We've tried explanations (which he doesn't want to listen to-"I KNOW"), we've tried a little role playing, which he also doesn't want to partake of. We coach ahead of time, and I always struggle with how far to let him go on his own. I don't want him to have bad experiences, but I also know that eventually he needs to learn to navigate on his own (and it does work, sometimes).

I blame myself for tonight. I should have recognized that the pool was much too crowded, the kids perhaps too tired, and me too lazy to change into a swimsuit and instead sat on the side. I wish I was a bit more like Emily.

Obamacare and Disability

2009-07-23T04:45:00.001+01:00

photo credit-irina slutsky
creative commons license

Like many Americans, I watched President Obama talk about his health care plan on TV tonight. Many others will comment on the plan in general, but I want to point out what I think are some possible implications for care of the disabled.

First of all, FULL DISCLOSURE-***I am a DOCTOR***. Now I know in a lot of people's minds that immediately may make them tune out anything that I will say, assuming that whatever I say will be self serving. I happen to think that since I have worked continuously in health care in one job or another continuously for decades (yikes!) that I may just have some insights into a couple of things. Your mileage may vary.

Basically, on the surface, today's talk by the President promised that nearly everyone will be covered, you won't lose your present doctor or insurance choice, you'll get all the health care you need, and it won't cost you or the country any more money. Sounds great, right?

Well, anyone with a lick of sense knows that all of that can't be true. So let's look at one of the things that WAS said, and think about it's implications.

One of the things that has been advocated (and that the President heartily endorses) is some sort of a national group of "health care experts" that would determine what treatments should be covered. This group would be a "non-partisan" group in Washington, D.C. This is being sold as "We'll eliminate unnecessary treatment", but there have been no parameters floated saying exactly what kind of treatments they will eliminate in order to save money.

I suspect that some of them may be reasonable, such as requiring prescription of generic drugs when available (though there are several times when patients react badly to a generic, and not to a brand name). Also, undoubtedly, many services for senior citizens will be either delayed or denied. Such things as hip replacements and knee replacements, as well as cataract surgery. Criteria will be imposed, and if someone is judged either to be not debilitated enough, or not to have enough useful years left, then they will be left without service. No one in the administration will admit this, but all healthcare economists pretty much agree on this. This is certainly what happens in other countries that have nationalized their healthcare system.

Now the reason I bring this anonymous, faceless committee up is the effect they may have on the disabled. The whole concept of futility and futile care has been big in ethical circles of late, and this concept is sure to enter into any decisions made by such a committee.

The problem becomes when this central committee decides on what constitutes futile care for a particular person. Instead of a decision being made with the person themself, their doctor, and their family (if the patient cannot communicate), this central committee will make decisions as to whether a particular person's life is worth investing more health care dollars into.

I don't know about you, but I don't have much trust that such a committee won't have an inbred bias against the disabled. Society as a whole is biased against the disabled, but society as a whole up to now hasn't been able to out and out condemn individuals to die from lack of treatment. Such a committee will.

For those of you that will disagree with me, ask your legislator if he/she can guarantee you that no disabled person will be denied care based on their disability. They can't.

Also one last thought for tonight. The non-partisan Congressional Budget Office predicts that millions of Americans will be forced out of their present insurance plans by the institution of Obamacare, and force into the "public option". The most telling thing (IMO) regarding the public option is that both the House of Representatives, as well as the President himself tonight, refuse to include themselves in the public option. The President waffled tonight when asked whether he would submit himself to the same requirements as the public option. The House last week voted down an amendment to the health care bill which would have required House members to take the public option.

If they don't want that option for themselves, why is it good enough for millions of other Americans?

A Sad Case

2009-07-10T02:50:00.002+01:00

photo credit-mdkiteman
creative commons license

I saw this story yesterday, "Mother Accused of Withholding Cancer Medication from Autistic Son", in which a mother of an eight year old autistic son with lymphoma has been charged with neglect for failing to give him his chemotherapy at home.

Basically, the child had lymphoma, got his initial chemotherapy, then was supposed to follow up with home chemotherapy and additional follow up appointments, many of which were supposedly missed. Now the tumor has recurred, and is more aggressive, and the child's chance of survival has gone from 90% to 10%.

To complicate the situation, in addition to the child being autistic, the parents are going thru what has been described as a "bitter divorce", where the father hasn't had recent contact with his son, but has now assumed custody.

Orac has a good post up on this, but I thought I'd add my take.

In ethics, one way of approaching problems where there is conflict is termed the "4 Principles" approach. The authors Beuchamp and Childress wrote a groundbreaking book on medical ethics in 1979, which is now in its fifth edition. In this book, the authors describe four principles that could be used to assist in deciding questions of medical ethics. The four principles are usually listed as "autonomy, beneficence, non-maleficence, and justice". A fairly good concise overview of these principles can be found here.

Although Beuchamp and Childress never argued that any one principle should be more important than any of the others, in American medicine and ethics circles autonomy has generally been held to be "first among equals". What this means is that, generally speaking, a competent adult has the right to refuse any treatment, even if doing so would kill them.

As children generally can't decide for themselves what is best for them (especially 8 year olds), their parents are usually given broad leeway in making decisions for them. Historically speaking, however, there are definite limits to this authority.

For instance, if a child needs a life saving blood transfusion but the parent's religion doesn't allow for any blood products, then it is routine in children's hospitals for emergency custody to be granted to someone appointed by the state, who will approve the transfusion. This case appears to be similar, but not totally identical, to the case of a blood transfusion. In this case, a relatively simple (but still with arguably potential serious side effects) was withheld from the child by the mother (according to the charges). The question is whether the mother should be able to act on her son's behalf and refuse treatment.

Before going further into this, let's go back to the other three principles.

Beneficence means doing the best thing for the patient. It would seem obvious that giving the child the chemotherapy would be the best thing. But each adult has the right to refuse treatment, even chemotherapy. And even with the chemotherapy, there would be a 10% chance of dying. A competent person might say that they would rather have a 10% chance of living, and not have to undergo the pain of needlesticks, the constant nausea, hair loss, weight loss, fatigue, etc. But certainly most people would choose to undergo all of these things in order to improve their chances of survival from 10% to 90%. And most of the time, although chemo is still chemo, outpatient follow up treatments generally have a lot less severe side effects than the initial inpatient treatment.

Although I often think of this Disney character when I hear the word, non-maleficence, what it actually refers to is not harming the patient. The second thing I think of (after the Disney character) is the medical aphorism "First, do no harm." Again, what we balance here is a large potential future harm (recurrence of the tumor, which is what in fact happened) against the immediate harm of undergoing treatment. Perhaps undergoing treatment for this autistic child was particularly difficult. Treatment may have included injections of chemotherapy into the spinal canal, and depending on whether they were willing to anesthetize the child for these, it might have been fairly traumatic (even undergoing anesthesia to have it done might be fairly traumatic). So it's not necessarily a total slam dunk when it comes to considering non-maleficence.

Finally there's justice, which basically means doing what's fair, as well as what's best for society as a whole. Society benefits from having healthy citizens. And most people would agree that all people deserve to get chemotherapy for a tumor. So I think that most would agree that justice would fall on the side of the child getting chemotherapy.

So what we are left with is questions of the mom's ability to speak for the child against the state's interest in having healthy citizens, and beneficence weighing heavily on treating the disease process, as the treatment is mostly safe, though it has some potential bad side effects.

I think that most people would treat their child in a situation such as this, which is why people are up in arms, and why charges have been filed. The mother may have a certain degree of ignorance regarding the risks involved, and may also not have a lot of support in her life at the moment (though I know that's no excuse). The father may or not be a "victim" in all this. He may share some of the blame for not picking up some of the slack, or may have been actively excluded by his wife. It's hard to tell from outside.

In the end it doesn't look forward for the child, but we can all hope for miracles. And I hope that the child's autism did not enter into the mom's equation of whether to withhold treatment or not.

Skate x Skate

2009-07-02T05:23:00.002+01:00

photo credit-multiplication.com

Multiplication tables (as well as most other math facts) have been a hard go for Buddy Boy. His third grade class started on the "8's" and "9's" back in March, and he still hadn't gotten them down by the end of the school year. Liz worked with him, his teachers tried various strategies, but nothing seemed to work. Every time Buddy Boy had a problem, he had to stop and sequentially add things, or if he was able to remember a rule, he would take minutes to painstakingly work through it step by step.

So near the end of school Liz went searching for a new approach, and as soon as school was out, she was ready with some workbooks. Two of the books were variations on regular math workbooks, but one of them was decidedly different. This one, "Memorize in Minutes: The Times Tables" looked rather silly, and I didn't hold out much hope for it.

The book has silly pictures (complete with silly stories for each one) to teach the times tables. The times table above is "8 x 8 = 64", and down below it says "skate x skate = sticky floor". The accompanying story describes how two skaters went skating and got stuck to a sticky floor, which was covered with a gooey, sticky, substance. Huh? How was a series of stories going to get Buddy Boy to remember his multiplication tables? Even if he did, I figured it wouldn't save him any time over what he was already doing.

It worked.

What couldn't be accomplished in months was virtually all memorized in a week. Buddy Boy and Liz worked their way through the "8's" and "9's" in a week, and are going back to some of the other numbers. Buddy Boy demonstrated his now fairly rapid firing off of various multiplication facts. It was truly amazing. What had before taken minutes now took about 2 seconds each. I was impressed.

So if you're having similar issues, this might be something you want to look at. The website's here. We paid for our book, and have no financial interest in this product. But I'm glad that someone thought "outside the box" on this one, and put this together.

Call Me Ishmael

2009-06-28T05:07:00.002+01:00

Summer is a great time in our house. Mostly because school is out. There's no waiting for dreaded phone calls, no worrying about academics being shunted aside in favor of watered down "make work" or "compliance", and little worry about increased stress levels (for all of us).

Summer is a time of tending the garden, kids going to camp, taking a vacation (holiday), and neighborhood festivals. Academics aren't totally left behind, but they're done on our schedule and in light of our kids' needs, not on the school system's. Liz does a yeoman's job of making sure the kids read (and get read to) each day, and filling the gaps of things they didn't quite get during the school year. She's even found kids versions of classic books for them to read.

Buddy Boy struggles somewhat with math, and Liz has systematically investigated how he processes math problems, and come up with some novel strategies to assist him. After months of failing to be able to memorize basic multiplication facts (e.g., 6 x 6 = 36), Liz found some workbooks that use stories and rhymes to assist in memorizing math facts. They seem to be working.

But studying is pretty low key, and the kids don't seem to mind a couple of short sessions each day.

So what did we do today, when temperatures topped out at 98 degrees Fahrenheit (36.7 Celcius)? Stay inside, crank up the air conditioning? No way. There was a local carnival in a nearby park, and the kids kept asking to go.

We didn't stay all that long (it was pretty hot, after all), but the kids had a good time. Afterwards, we went to a local ice cream parlor for another time honored rite of summer.

Sweet Pea had a little trepidation about tackling the ride pictured above (you sit in a seat that goes around and around in a big 50 feet vertical circle), but eventually said that she wanted to do it. Although she looked a bit scared when it started up, by the end of the ride she loved it. Buddy Boy went with her, and provided moral support.

Buddy Boy's also been working on jokes lately (everything from "knock knock" jokes to puns). Sometimes they're funny, sometimes they're not, but he's getting much better overall. When he got off the ride, he walked up to us and said very seriously, "Call me Ishmael". We just had to laugh.

Dignity

2009-05-31T01:35:00.005+01:00

So I was watching TV this week when this ad came on. After it became apparent that it was for a charitable organization, I expected to see some variation of the usual "pity party" that is all too common amongst many charitable groups. You know, "Aren't we great that we are helping these poor, helpless people thing. Instead I saw this. This is not my congregation, but I invite you to watch an alternative way to depict serving others in society.

Wouldn't it be great if groups like Autism Speaks took such an approach?
-----------------------------------------------------------------------

"Dignity"
Trinity Lutheran Church
Volunteers serving the homeless
First course: dignity

Read the story behind the ad.

I Can See Clearly Now

2009-05-15T01:42:00.005+01:00

photo credit-kevindooley
creative commons license

Q: What makes a third grade boy want to sit at the front of the class?

A: He needs glasses.

After getting some hints that Buddy Boy needed some assistance (mis-reading the board, asking to sit closer), we took him to the eye doctor. He actually was both quite fascinated by, as well as cooperative with, the whole process.

photo credit-chris runoff
creative commons license

After being shown several pages in a book similar to the above and correctly identifying the numbers he announced "At least we know I'm not color blind." His vision isn't that all bad (it's between 20/30 and 20/40) but since he's having some difficulty with schoolwork we decided to go ahead and get him the glasses. He'll have the whole summer to get used to them, so they'll feel natural by the start of next school year.

So far things seem to be going all right with them.

Meanwhile, now that he's seeing a bit clearer, he's also seeing autism everywhere. Or at least some places it probably isn't.

Buddy Boy's teacher's husband is also a teacher at his school. He teaches music, but not Buddy Boy's class. But Buddy Boy knows him because at the end of the day he comes to Buddy Boy's class to wait for his wife. While he waits, he usually uses the computer, and trys not to get in the way.

Evidently Buddy Boy has decided that Mr. L is autistic. He told his teacher, Mrs. L, this last week. "Why do you say that, Buddy Boy?" she asked. "Well, he spends a lot of time on the computer, doesn't answer my questions when I talk to him, and sometimes is a little grumpy." Mrs. L just replied "Those are interesting observations." Now Mr. L is a quiet guy, but I hardly think he's on the spectrum. But since Mrs. L didn't out and out deny that her husband was autistic, Buddy Boy took this as affirmation.

So this week Mrs. L is appropriately laying down the rules for Buddy Boy when he wasn't doing something he should, and he comes out with "Mrs. L, since you are married to someone who is autistic, I would think that you would be a litte more understanding of me!"

Two more weeks until school is out for the kids! We're counting the days.

Just Claim They Were Autistic

2009-05-07T19:02:00.003+01:00

photo credit-hrtmnstrfr
creative commons license

In a story on the wire yesterday, a man in Salem, Oregon was arrested and jailed after shocking his four children with a shock collar meant to train dogs. According to the story

"Todd Marcum, 41, said he did it "because he thought it was funny," Salem Police Lt. Dave Okada said. ...

Marcum was taken into custody on four charges of first-degree criminal mistreatment. He is in the Marion County jail."

Now if Marcum had had a lick of sense, he would have just told the police that he thought his children were autistic, and needed some training. Because he had been on the internet, and he knew that the Judge Rotenberg Center uses shocks to control autistic kids. And it's perfectly legal. Other states even send their autistic kids to Massachusetts to the JRC so they can be shocked, too.

Marcum could have stated that his children were swearing, nagging, or flapping their hands, and thus qualified to receive shocks.

Now the only problem is that the dog collar that Marcum used was probably a lot less powerful than the one that is routinely used at the JRC. The dog collar is a small, self contained unit, while the JRC devices need a backpack to haul around. The dog collar will stimulate for up to a half second, while the "GED" devices used by the JRC will shock you for up to 2 seconds.

I found out while poking around that dog collars are subject to legal regulations, which state (amongst other things) that they can be applied for no more than 12 hours in any 24 hour period, and they can't put out more than 15 milliamps root mean square. The JRC uses devices that put out an average (not maximum) of 15 milliamps RMS, and a maximum of 45 milliamps RMS (fully three times as powerful as the maximum allowed for a dog collar).

So Marcum, if you or your lawyer are reading this, just claim you were using a tried and tested method of disciplining your kids, who you suspect are autistic (don't forget the autistic part-people might not approve of your behavior otherwise).

Perhaps the Massachusetts and New York legislatures would be interested in the torture by electric shocks that is occurring if there were dogs that were being shocked. Because they haven't been interested when it was only autistic individuals involved.

Where the Rubber Meets the Road

2009-04-28T00:24:00.005+01:00

The organization ADAPT staged a non-violent sit in at the Whitehouse today in Washington, D.C. For those of you who aren't familiar with ADAPT, it is an organization that advocates for the civil and human rights of the disabled.

This protest was in support of the CCA, or the Community Choice Act. If passed, this act would provide much more support for the disabled to live in their own homes, instead of being shunted into institutions (both large and small).

The current administration has talked a lot about support for the disabled. It's time to see if they're willing to support their words with action. It will take spending some political capital to get lawmakers to sign onto this bill (the disabled, being mostly invisible to lawmakers, are not seen as a significant part of anyone's voting base). Today's action raises the visibility of the disabled, and may be the nudge that lawmakers need to actually act in their constituents best interest.

Instead of having the money flow to people through big agencies and big institutions, the CCA would allow more of the money to follow the individual, such that they could procure assistance in their own home, and remain independent and integrated into their own community.

If you're in the US, contact your own legislator and urge them to pass this bill. For your Senators, the bill number is S. 683. For your House members, the bill number is H.R. 1670. If you're having trouble composing your thoughts, you might want to refer to these talking points that ADAPT has gathered together.

Spring has Sprung

2009-03-19T01:23:00.002Z

photo credit-Dan Zen
creative commons license

Yesterday it was about 75 degrees Farenheit (24 Celcius) in the lower Midwest. The sky was blue and clear, there was a soft breeze, and no humidity. In short, it was a perfect day. I happened to get out of work early, and treated myself to a late lunch on an outdoor patio of a nearby restaurant.

Today I noticed all sorts of flowering plants, bushes, and trees springing up all over the place. Lillies, redbud, dogwoods, and one of my favorites, the forsythia shown above. The forsythia always seems to just start to peak around Sweet Pea's birthday, which is coming up shortly (she'll be 7).

I'll always associate forsythia with Sweet Pea, as this riotous yellow flowering bush was in full bloom when we went to attend her birth in the city she was born in, and fully in bloom a few weeks later when we brought her back home.

Somehow the explosive, in your face color that screams "Notice Me!!" and "I'm So Cute!" seems thoroughly appropot of our daughter. Sweet Pea is always full of energy, and she is always noticed when she enters a room (whether you'd like her to be or not). Although Sweet Pea is often a bit too loud, a tad too competitive, and a bit too demanding at times, I love her spunk. She has the drive and determination that, when harnessed a bit with maturity, will serve her well in life.

Although a lot of my blogging has to do with Buddy Boy, I just wanted to take a minute and give my second child (the one who I tell every night "You're my favorite girl in the whole wide world") a little bit of ink, too. I can't wait to see what both of my kids grow up to be.

Thinking Outside the Box

2009-03-02T01:24:00.003Z

photo credit-Shutr
creative commons license

There are two old sayings that come to mind when I think of seclusion rooms. One's an old Japanese saying-"The nail that sticks up get's hammered down." The other one's a saying that's commonly used in surgery-"When all you've got is a hammer, everything looks like a nail."

I think that both of these principles have come to govern the use of seclusion and restraints in special education. For too many years, in too many places, children who have occasional outbursts in schools have been seen as disruptions, nuisances, drains on resources, undisciplined, bad, and generally problems to be controlled. And the tools that have been most often resorted to to remedy the situation have been the ones seen to be most expedient-the use of restraints and seclusion rooms.

It was recognized over 50 years ago in psychiatric hospitals that use of seclusion rooms and restraints increased, rather than decreased, the incidence of behaviors. Why, then, does the use of these rooms persist into modern times in schools?

People must use them because they believe it's the best alternative. But what leads them to believe this, and what are the real facts?

In a monograph written for the Council for Children with Behavioral Disorders written in 2000, Michael P. George, the author and a special educator, refers to potentially damaging assumptions that he believes are present amongst special educators are the following:

Children with emotional and behavioral disorders (E/BD) come from bad homes, and since we cannot change the homes, we cannot succeed with the children in our schools.

Children with E/BD are incapable of controlling their behavior or regulating their emotions, and it is up to us, the professionals, to control them.

Most children and youth with E/BD are so aggressive and violent they can be educated only in very restrictive settings.

The more serious the misbehavior of the children and youths under our care, the more intrusive and severe our methods must be in treating them.

Seclusion time-out and physical restraint are necessary interventions for the most serious and intractable of these youths.

He then asks the obvious question of how those beliefs guide practices and methods, and concludes that many in the field accept the use of seclusion and restraints because they are believed to be effective. Meanwhile, the obvious side effects of using violence to treat violence (anger, resentment, fear, resistance, feelings of hate, and even death) were being ignored.

George then describes how the culture of the school was changed, which resulted in a year to year difference of a decrease in the use of physical restraints by 69%, and a decrease in the number of minutes spent in seclusion by 77%.

Ryan et al., in an study entitled "Reducing the Use of Seclusion and Restraint in a Day School Program", describes how

The majority of students placed in seclusion during both school years came from elementary and middle school. High school students were rarely placed in time-out during either year (10.7% and 12.4% respectively). Restraints were also performed much more frequently among younger students during both years. During the 2002–2003 school year, the preponderance of all restraints (80.9%) were performed on elementary students. Students in middle school were much less likely to be restrained (14.7%), while high school students rarely (4.4%) experienced this procedure. During the second year, the elementary grades still represented the majority (67.9%) of all restraints performed, while no restraints were performed on high school students.

The median age of those placed in seclusion was 13, while the median age of those restrained was 8, even though the study group included children up through high school (approximately 18 years of age). He attempts to explain these findings thru positing the following possibilities:

1. their possessing fewer mechanisms for coping with frustration,
2. staff may believe intrusive procedures may be more developmentally appropriate for younger children, or
3. that staff may be apprehensive to perform these procedures on larger and stronger individuals.

Whatever the reason, it seems apparent that it's generally considered OK to restrain and abuse kids in special education, especially when they're young.

Dr. Stuart Ablon, Associate Clinical Professor of Psychology at Harvard Medical School in Massachusetts (yes, the same state that houses the Judge Rotenberg Center) is the Director of a program called "Think:Kids" in the Department of Psychiatry at Massachusetts General Hospital. This program espouses collaborative problem solving (CPS) with kids who have behavior problems, instead of the use of restraints and seclusion rooms. As one might expect from the name, CPS helps kids and adult caretakers work together to resolve problems in a mutually satisfactory manner. They try to identify specific cognitive skills that individuals lack (executive skills, emotional regulation skills, social skills, etc.) and find ways to teach them.

Unlike the assumptions cited above that special educators often have, they teach a different approach based on respect and collaboration. This approach was first laid out by Dr. Ross Greene in the book "The Explosive Child". Dr.'s Ablon and Greene collaborated on another book on the subject, "Treating Explosive Kids". While I'm not too wild about the use of the term "explosive" in the titles of these books to describe kids (are they about to literally blow up?) I am all for the philosophy and recommendations they make in their books.

I've referred before to how Ange is working hard at a grassroots campaign in Missouri against the use of seclusion and restraint rooms. If you haven't stopped by there before, please do and lend her some support. If you haven't signed any of the petitions below, then I would suggest that, too. And if you haven't written or called your lawmakers lately, remember that it might make a difference.

http://www.thepetitionsite.com/takeaction/831847137

http://autism.change.org/actions/view/end_the_use_of_aversives_restraints_and_seclusion

http://apps.facebook.com/causes/173391/22317452?m=b9452798

Let them know that there is a different and better way to treat our kids then seclusion and restraint.

Making a Difference, 10 minutes at a Time

2009-02-22T20:02:00.015Z

photo credit-Half Chinese
creative commons license

I think the internet is great. It's a great way of connecting with people in your community and across the globe. It's big enough that there is space enough for every niche interest imaginable. I also believe that besides connecting with other people, the internet can assist minority groups in advocating for themselves, as happened with protesting the Ransom Notes campaign.

But I also think that the internet has its limitations in effecting change in socieatal attitudes and laws. My personal feeling is that the internet is one tool in a big handbag of ways that can be utilized to change opinions. Should we utilize the internet? You betcha. But I also think that we should also pursue other avenues whenever they present themselves, as well as combine the internet with other methods to gain greater influence than either method might obtain by itself.

The other day I blogged how Ange Hemmer is working to change practices in Missouri schools. She has used the internet to gather parent testimony, but she has also spent countless hours on the phone and in person talking to legislators, state advocates, and reporters, generating several stories in the media that have probably gotten at least some people to reconsider their inner feelings regarding those who are different in society. She's even starting to get some results.

Today I'd like to highlight a young autistic filmmaker named Drew, who's film, "Treasure Diversity" is being screened at the Beloit International Film Festival.

Though the film is only 10 minutes long, the film festivals executive director, Rob Beaudoin said "There is a magic to this film that caused me to think differently about people and about life." After viewing the trailer, I am sure that his reaction is not unique. In addition to being screened at BIFF, Drew's film has been screened not only at other US film festivals, but also festivals as far away as Australia. Not too shabby for a 12 year old kid. His 10 minute movie has the potential to reach thousands, if not tens of thousands of people.

I think we all need to look for opportunities to make a difference in other people's attitudes. We might not be filmmakers, or be able to make the time to travel to our state capitals to lobby legislators, but we all can take the time to write our lawmakers and let them know how we feel, as well as educate people we come into contact with every day. Even if it's not 10 minutes, even 1 or 2 minutes add up over time.

Fighting Restraints and Seclusion

2009-02-20T02:31:00.001Z

Blogger Ange at http://nomoseclusion.blogspot.com/ has been waging a quiet, persistent campaign against the use of restraints and seclusions in Missouri schools. She's been gathering accounts of children's experiences when put into seclusion rooms in schools, and the people at the Misssouri
Protection and Advocacy Services have taken an interest in this cause. She's also traveled to the state capital to testify regarding pending legislation that would shield teachers from prosecution when they get physical with kids in school.

This week her efforts have really paid off, as she's gotten media attention. Two television stations have aired stories on this this week (one of them on two successive nights), and a popular local radio call in show also took on the topic today.

The local NBC affiliate story can be found here. Do drop by and (respectfully) let them know that it's just not right.

And if you see Ange around here, remember to thank her.

What's Next?

2009-02-13T04:16:00.002Z

photo credit-crabchick
creative commons license

I don't know whether to feel more like an Egyptian Pharoh or a guy named Job. Either way the past 24 hours have been a little "sucky" around here.

Last night I came home to find that the beautiful 40 foot white pine tree that was in front of our house fell down during the day. The ground has been saturated by the rain, and the tree has been a little lopsided the past couple of years since it lost one major limb in a storm. The good news is that no one got hurt, and the tree fell away from the house, instead of on it. Both very good things. The tree service came today and hauled it away. Don't know what that's going to cost. And we still need to get the stump ground down.

Today I was conducting a workshop at the end of the workday when I got a page to call home. "The basement's flooded!" We had about a foot of water down there. Not from the recent rains we have gotten, but from our sewer line getting clogged up. It's probably been clogged for a couple of days. We don't go down there much, as our laudry machine is on the main floor. 5 hours later and the plumber just left. The waters draining again, but tomorrow he'll be back to snake a video camera down there to see what's what. I'm so looking forward to that. The good news is that the basement of our 128 yeare old house is unfinished, and also has a step in the middle. Only the lower part is flooded so there's half as much to clean up. The furnace is on the flooded side, but is working OK for now. I know what I'll be doing this weekend. If anyone has any tips on disinfecting your basement after it's been flooded, bring them on.

Whatever it is that I've done wrong, G_d, I'm sorry. I'll try to do better. The kids would love the frogs or locusts, but if it's all the same I think I'll pass, if it's OK with you.

Is It Spring Already?

2009-02-10T04:53:00.001Z

Perhaps it is just cosmic Karma, that if things go well for a period of time, that some negative balance has to happen. Perhaps it's because the weather's been warmer the last couple of days. Perhaps there is absolutely no reason at all, but today Buddy Boy had a major meltdown at school (actually two incidents).

In the morning he got upset about something relatively minor, went to his spot in the class to calm down, then got more upset and was sent to the principal's office, where he calmed down after an hour or so. After lunch and recess, he got upset in math class, jumped on a chair and then a desk, bit himself really hard (he says he didn't want to be agressive against anyone else), then when he was being taken for a walk in the hall started head butting the brick wall. When another teacher started to intervene to try and prevent him from hurting himself, he head butted her. Liz was called and picked him up.

He seemed fairly normal for the rest of the afternoon, completing much of the work he missed by being taken out of school, and expressing remorse over his actions.

Last year Buddy Boy had a bad Spring, which started getting really bad in April, and continued thru May. Like last year, we got lulled into a false sense of security, as everything has been going fairly well for all of us. Now Liz has catapulted herself to Defcon 2, and seemed to be having a flashback from last year when I got home. She was poring over last year's calendar (where she wrote all of last year's problems, observations, med changes, etc.) looking for some inspiration or answer to get us thru this. She found nothing. We wonder out loud if the fact that his class size has gone from 18 at the start of the year to 23 now has changed the dynamic sufficiently to cause such a change. We've had people come in to observe before when Buddy Boy's had problems (the school will let outside "professionals" in to observe, but not parents), but it's hard for someone that doesn't know Buddy Boy's baseline to get a handle on what's happening in a few short hours.

Tomorrow is another day, and I just hope that somehow we can get thru that one, and then another.

Thank You, Pikachu

2009-02-08T05:54:00.002Z

photo credit-fuzzcat
creative commons license

About a month ago Liz remarked to me that Buddy Boy wanted to get a Pokemon game cartridge for his Nintendo DS. He wanted it because two kids he sometimes ate lunch with talked about Pokemon all the time. She was worried that Pokemon was too violent. All she knew was that they "fought" each other. While I don't know a whole lot about the intricacies of the game, I knew it was animated and that there really wasn't any violence to it. I quickly convinced her that it was basically harmless, and might lead to some spontaneous social interaction.

Well, we got him the cartridge for his 9th birthday last month, and he's been playing it ever since.

This afternoon, as I was getting ready to go pick up Sweet Pea from her third birthday party in as many weeks, Liz informed me that a boy from Buddy Boy's class was coming over to play. She also told me that

THE OTHER BOY HAD ASKED BUDDY BOY IF HE COULD COME OVER!!!

You could have knocked me over with a feather.

Evidently this other boy has always been interested in, and nice to, Buddy Boy since he transferred to this school two years ago, and inserting Pikachu and his friends into the mix provided enough commonality that this other boy wanted to spend more time with Buddy Boy. While Buddy Boy has had a few parent instigated play dates in the past (none in the last 3 years or so), he's never had a "kid instigated" play date. This was HUGE.

The kids seemed to get along relatively well. They played together for a while, then I took them to the park, where Buddy Boy tended to want to dig holes with a stick rather than playing tag, but once they got back home they got back to playing together again. I think both of them had a good time, which counts as a raving success in my book.

Thanks again, Pikachu.

Hope They Can Believe In

2009-01-24T05:07:00.004Z

photo credit-jetheriot
creative commons license

So Tuesday afternoon (the day of Obama's inauguration) Sweet Pea comes home from school and says to Liz,

"I know this is a little bit mean, but I wish my daddy were Barack Obama."

As Liz relates this to me when I come home, I imagine that my daughter is finally getting some racial identity with the African-American side of her heritage. Perhaps she'll identify more with her black dolls, and less with the blond Barbie?

Liz continues that she responded,

"Oh really, sweety? Why do you say that?"

"Because then we could have a puppy."

"Couldn't you just wish that your dad wasn't allergic to dogs?"

photo credit-lepiaf.geo
creative commons license

Last year, Buddy Boy suggested we could get a dog, and "Don't worry, Dad. You could live in the basement." (The unfinished, unheated basement of our 125 year old house).

It's good to know that, given a choice between a real living dad and a hypothetical dog, the dog will always win.

What Happened??!! Jett Travolta dies

2009-01-02T22:54:00.004Z

My wife tells me not to jump to conclusions, but I'm very suspicious right now.

John Travolta's 16 year old son, Jett, has died while on vacation with his family in the
Bahamas.

According to TMZcom:

... Jett was last seen going into the bathroom at their private suite at the Old Bahama Bay Resort sometime yesterday. The body was discovered by the caretaker, Jeff Michael Kathrein (pictured bottom right with Travolta in 2006), at 10:00 AM today. The report says Jett suffered from seizures. ...

Jett was widely rumored to be autistic, though the Travolta's denied this, and said instead that he had Kawasaki syndrome (an autoimmune disease that can lead to heart disease). Being autistic is something that is seen as a defect by Scientologists, which is the "religion" that the Travoltas belong to.

My immediate questions are:

1) Why was a 16 year old unaccounted for from yesterday evening to 10:00 am this morning? What adult was responsible for him?

2) Did Jett have a documented seizure disorder?

3) What medicine was he on, and who gave it to him (i.e., did he have proper blood levels of the drug)?

4) Was Jett undergoing any "detoxifying" treatments while he was in the Bahamas? Could chelation leading to a chemical inbalance have caused the seizure?

I'm not jumping to conclusions. But I hope that this unfortunate death is fully investigated, and the truth is made public.

Janus

2008-12-29T21:29:00.001Z

photo credit-Matthew Oliphant
creative commons license

The traditional New Year's song, Auld Lang Syne begins,

Should auld acquaintance be forgot,
and never brought to mind?

One might think, from the scarcity of my posts these last few months, that I had forgotten all of my blogging friends and acquaintances. You have all remained in my thoughts (and sometimes in my prayers), but I am certainly guilty of letting this blog lay fallow like a field in winter. So in the tradition of the season, I'll recap a little of what's been happening this past year.

I'll start with last December. Remember the Ransom Notes campaign? I thought this campaign (actually the response to it) marked a significant moment in autism advocacy. Ari Ne'eman and ASAN coordinated a successful effort by a wide spectrum of groups and individuals to quash an ad campaign in New York City that demeaned autistics and others. Online advocacy successfully crossed over to "real world" results, which totally rocked!

January was a quiet and happy time for us. Buddy Boy had a family John Deere themed party, followed by a successful "Mad Science" party with kids from school. It was a great start to the year.

March was when the Poling case entered the news. I was mightily disappointed by the verbal musings of the father in this case, Jon Poling. As a physician (and a neurologist) he could have taken the opportunity to point out that his daughter's case of being "vaccine injured" was a rare anomaly, instead of spouting off with unproved suppositions that there were thousands of cases like her out there. Perhaps his comments were only rehashing ones made by his lawyer, Clifford Shoemaker, who was at the Poling's side at their press conference.

Speaking of Shoemaker, in April he served a ridiculous subpoena against Kathleen Seidel, who fought back with all the force and tenacity of a superhero librarian. Shoemaker eventually was disciplined for this with a slap on the wrist. Still, it was good to see the "good guys" win.

The mind is a funny thing. Before going thru my old posts to put this together, I had completely forgotten the trouble Buddy Boy had in school last Spring. Reading my post brought all of my feelings from the time bubbling back to the surface. Last year was the first year that Buddy Boy was pretty much fully included in a regular classroom. It started off great, but deteriorated in the Spring to a combination of chaos and mayhem. If not for the understanding and forbearance of his teachers and the administration at his school (as well as Liz's immediate support when necessary), Buddy Boy might have been forced to leave his school. I'm not sure where we would be this year if they hadn't stuck with him when the going got tough last year.

This year has again started out great, and continues so thus far, with Buddy Boy in a class where a regular ed and special ed teacher are "co-teaching" this year. Only a few minor speed bumps have been encountered. After looking back at what happened last Spring, we'll be ready (or as ready as we can be) for any recurrences this year.

April is also when I attended a talk by the "philosopher" Peter Singer, who advocates that parents should be able to dispose of (kill) any child they don't want, especially defective ones, until they are several months old (or older, if they are disabled). Eugenics has never really died out in the world. Advances in genetics and prenatal testing are just allowing it to be practiced largely out of public view nowadays, as prospective parents of children with Down Syndrome are encouraged to abort their children before they are born. Unfortunately, we can expect the same response when prenatal tests for other conditions, such as autism, become available. I credit attending this lecture as one of my prime motivators for returning to school this year. I just completed my first two courses in bioethics (did I mention that I got "A's" in both classes?). Evil (especially polite, well-spoken evil) should never be left to stand unopposed.

The mentioning of Singer reminds me that one of his most erudite opponents, Harriet McBryde Johnson, died this year. Although I never met her, her loss is one that was a great one to the disability rights community, and one that I felt deeply. If we all became half as good an advocate as she was, the world would be a better place.

May also found the Judge Rotenberg Center in the news again, as revelations of repetitive electric shocks to "students" triggered by prank phone calls proved outlandish enough to get the media's attention (all of the repetitive shocks to students for minor infractions such as talking back or not being neat evidently aren't enough to stir a media response any more). Supposedly the JRC is having its practices reviewed by the state of Massachusetts thru this December, but I haven't seen any official site saying this, and haven't heard any other recent actions taken against the JRC. Perhaps 2009 will finally be the year that the general public pays attention to the atrocities that routinely take place at the JRC, and close the place down.

Summer was great for us. Buddy Boy continued to make strides in conversing with, as well as socializing with, other people. He even showed the first inklings of becoming his own advocate at one point. Sweet Pea got her first taste of freedom as she lost her training wheels this year.

Summer also found us getting physical, as we cleared and planted a garden, and later reaped what we had sown (the parts that the moles hadn't cleared out, anyway). Our final harvest was a pumpkin for Halloween.

The political scene in the U.S. was certainly an exciting one this year. It was at least somewhat ironic that the majority of the disability community did not support a ticket that had a physically disabled person on the top of the ticket, as well as the mother of a developmentally disabled person as the VP. Barack Obama has promised a lot to the disability community. I hope that he can deliver on half of what he has promised, and wish him well.

This holiday season finds me thankful for all the people that made it down to our house for Christmas this year. We got a call on the 23rd from an ER nurse two states away from us. "I'm xxx, and I'm calling on behalf of (my sister), who just wants you to know that she's all right after the accident".

Accident???!!!

A semi-truck had swerved a bit on some ice in front of her, and she had swerved a bit reflexively to try and avoid hitting the truck. She avoided the truck, but lost control of her own vehicle, and ended up going into the ravine between the highway lanes, up the other side, flying (literally) for 30 feet in the air, and ending up in the opposite ditch. Other than being banged up and looking like a cross between a raccoon and a Klingon (black eyes and a big hematoma in the middle of her forehead extending down into her nasal region) she was fine. Needless to say, her vehicle was totaled.

I drove down (thru blinding sheets of freezing rain) to make sure she was OK, spent the night there, and drove back with her up to our place the next day. Having that happen sure makes you appreciate the mundane things in life, and keep you from lamenting the things you might have gotten from Santa.

So that's about all that's been happening from the Club 166 point of view this year. I've signed up for two more courses this coming semester (Law and Bioethics and Justice in Health Care). I'm sure that once classes start up, I'll be mostly absent again.

Happy New Year to one and all!

Clean Sweep

2008-11-30T04:33:00.002Z

There are many more important things that I could (and should) be blogging about, but this amazed me so much I just had to write about it. My sister came to stay with us from out of state for the Thanksgiving holiday. While we were preparing our back room upstairs for her to stay in, Liz noticed that the walls had some "stuff" on them.

"What is that?", she said. Sweet Pea, ever the helpful one, said "Looks like poop!" "What is it?" Liz says again, a bit more stridently. "It's smeared all over the place."

Buddy Boy chimes in "That's from the fly paper."

My heart sinks a little. The fly paper.

A couple of weeks ago we had thousands of flies swarming outside of our house for a couple of days. We called an exterminator, who assured us that this was common this time of year, and that they would go away with the first frost. Needless to say, a couple dozen made their way into the house. Buddy Boy insists that any insect must be returned to it's environment if we won't let him keep it as a pet (Andrea would love this kid), and Sweet Pea seems to think that any insect has the power to kill her instantly, and is thus terrified of them.

Faced with the prospect of dealing with both of them, I looked for a way to eliminate the problem. I looked thru our pantry and found a couple of rolls of flypaper. Thinking this might work, I put one up in the back room. Liz had me take it down a couple of days later after it became apparent that the unique sticky surface attracted curious kids more than it did flies. I didn't notice at the time that they had managed to smear some of the sticky stuff on the cream colored walls (which we don't have matching paint for).

Now, with 24 hours before my sister shows up, I was tasked to "Take care of that!"

Realizing that I didn't want to make a bad situation worse, I resolved to get the icky brownish yellowish stuff off the wall without destroying the paint (I did not want to have to paint a wall before she arrived). So I proceeded carefully.

First, I started with a rag with dishsoap on it. I scrubbed carefully and increasingly harder for over 20 minutes. I got some of it off, but most of it stayed where it was.

Like a philosopher progressing steadily up thru Maslow's pyramid of human needs, I tried what I viewed as successively more potent materials on the wall. The next material I tried was a floor and tile cleaner. I tried it carefully on an out of the way spot to make sure it wouldn't ruin the paint, then had at it again for another 20 minutes. Again, it left most of it where it was, only it turned what remained a darker shade of gray. Getting exasperated, I retreated to the mud room and tried some pine based floor cleaner, again to no avail. This was starting to get to me. I finally decided to go for the big guns-a scouring pad and kitchen cleanser-realizing that I would have to be very careful and would still probably remove some paint.

Luckily Liz saw me at that point and asked what I was doing. Fortunately it had been long enough that she had lost most of the fire out of her eye, and recommended the Mr. Clean magic sponges kept under the kitchen sink.

With little hope for successful resolution of the problem at this point, I took the sponges to task. I moistened one and started scrubbing lightly. And after spending more than an hour trying to get the stuff off, it started lifting off immediately. What's more, the paint underneath seemed totally unharmed. In five minutes I was done with those spots, and gleefully going after other spots (finger prints, putty, crayon marks, etc.).

"There's some rockin' chemist out there that hit one out of the park with this!", I said. Life is full of small miracles, and I experienced one this week.

Being Thankful

2008-11-26T04:50:00.000Z

photo credit-Hey Paul

creative commons license

Thursday is American Thanksgiving Day. It's one of my favorite holidays, because it remains one of the holidays that is least tainted by commercialism. We get to sit down, have a good meal with family and/or friends, and reflect a bit on all that we are thankful for (it doesn't hurt that I LOVE turkey, stuffing, and pumpkin pie).

We're now far enough into the school year for me to say that Buddy Boy's teachers, indeed his whole school, are bigs thing I'm thankful for. This year has been going GREAT! Buddy Boy's school instituted a model of teaching this year called "co-teaching". I'm not sure if it's the model or the individuals involved (or both), but it has been working out very well.

Basically, co-teaching is when a heterogeneous class of students is taught by both a gen ed teacher and a special ed teacher. One usually takes on the role of being the "content" specialist, while the other becomes the "process" specialist. Like all new things, we were a little anxious regarding how this would work out for Buddy Boy, but it has succeeded grandly.

Both of Buddy Boy's teachers volunteered to co-teach. One of them is a special ed teacher, and the gen ed teacher is actually currently pursuing her master's in special ed, so is open to doing things in non-conventional ways. The model seems to work for a number of reasons:

-the presence of two certified teachers decreases the student-teacher ratio

-rather than teaching of kids with special needs devolving down to the para-professionals during busy times during the day, there is a certified teacher to actually teach the kids.

-special ed kids are more likely to stay in their home classroom for larger portions of the day, rather than being parceled out to other venues.

-because it is voluntary, both teachers are enthusiastic about the model.

-even the kids that aren't identified as special ed get extra help when they need it.

The principal of the school also has a special ed background, and welcomed us with open arms when we transferred to this school two years ago. Everyone in the place knows Buddy Boy, and he is well liked by the teachers and staff.

I know that Buddy Boy is maturing, and in doing so is able to go with the flow more than he used to. Though this is a big part of his success, I'm equally convinced that it has been due in large part to the attitudes that are prevalent in the school and in his classroom in particular. He still has little incidents (like a couple of weeks ago when he followed another group of kids outside of the school when he was on the way back to his classroom from the school nurse). But these things are seen (and managed) as little speed bumps along the way, nothing to be concerned about, just things to be dealt with. His teachers celebrate his successes, instead of his shortcomings.

I'm a real thankful guy.

A Question As To Her Judgement

2008-11-23T05:47:00.004Z

photo credit-navets
creative commons license

Remember Wendy Portillo, the teacher in Port St. Lucie Florida who back in May this year allegedly had her students publicly humiliate and belittle a 5 year old student, Alex, then vote him out of the class? Well, the Port St. Lucie school district finally made a decision on Wendy. According to the TC Palm:

While school district internal investigators said there's no evidence Morningside Elementary teacher Wendy Portillo meant to cause harm or embarrassment to Alex Barton, they said in a report released Thursday there is a question as to her judgment.

Additionally, the article noted:

The St. Lucie County School Board voted unanimously Tuesday night to suspend Portillo without pay for one year. Her attorney notified the School Board in a letter that Portillo intends to contest Lannon's recommendation with the state's Division of Administrative Hearings.

So after 6 months of investigating, this is what they came up with. It's certainly less than I would want for someone who psychologically traumatized a 5 year old child, but if she moves on and gets a job somewhere else it will be worth it.

The report by the school also said:

The incident could cause Portillo to lose the respect and confidence of her colleagues, students, parents and the public, the report said, citing the extensive national and local coverage of the incident.

I don't think Portillo could lose much more respect in the public eye, though in checking the comments on that story 2 out of 6 still support her.

There are a lot of great teachers out there. Buddy Boy has two of them this year in his class. But when anyone abuses 5 year olds, (especially when they are in a position of authority and trust) then that person needs to be called out.

Here's hoping other potential offenders take notice of what happened to Wendy.

BOO!

2008-10-31T19:32:00.003Z

Well, it might not be the biggest pumpkin we've ever had (it's only about 10"/25cm high), but

We planted it.

We kept the rabbits and other animals from eating it.

We harvested it.

And then we carved it. The hardest part was in achieving consensus on what design to use.

Send Comments to NBC

2008-10-15T12:24:00.002+01:00

Last week I put up a post concerning a skit on NBC's Saturday Night Live, where the whole "joke" was making fun of a disabled person.

Well NBC thinks it's so funny they have the clip up on the SNL web site.

I just registered to make comments, and posted one myself.

I invite others to do the same.

Sorry there's no picture for this post. I'm rushing off to work.

SNL and Disability-Not Pretty

2008-10-06T04:43:00.004+01:00

So I tuned in to Saturday Night Live on Saturday evening (mostly to see what they would do after the Vice-Presidential debate this last week).

They had a very funny opening, and a couple of good bits. Then they did this "Lawrence Welk" bit:

It started out OK. I am old enough to remember going to my grandparents' house as a kid, and being forced to watch the Lawrence Welk Show whenever it was on. It was corny even back then, and seemed a fitting thing to lampoon. Then it got to about the 2 minute mark, where it appeared that the essence of the bit was how weird and disgusting the physically disabled sister was.

I was totally disgusted. I guess that it's still OK to laugh at the disabled, even if you're SNL.

Political Surprise

2008-09-13T05:52:00.002+01:00

photo credit-hjl
creative commons license

No, not that one. This political surprise was a lot more local.

You could have knocked us over with a feather when we got this news.

Buddy Boy, now 8 years old and in third grade, decided to run for the school council. To do so, candidates had to give a speech and make a poster. His poster simply said:

Vote for Me!

Buddy

We asked him what he said for his campaign speech. He said he told the kids that he would do whatever they said (sounds like he has a future as a politician).

And then the real shocker
-
-
-
-
-
-
-
He won!!!!

His teacher assured Liz that she had not made a mistake, and Buddy Boy had indeed been elected by his classmates. Buddy Boy's teacher moderates the council, so she'll be able to facilitate his participation (yahoo! another free social skills opportunity).

Buddy Boy seems pretty proud of himself, but at the same time says, "I thought I was going to win".

It's times like these when I can truly feel that anything is possible. And I also feel relieved, because we never seem to know exactly how the other kids are feeling about him. Are they accepting him for who he is? Do they like him at all? Or just tolerating his presence?

Today those fears recede to the background. Today we celebrate.

Palin speaks to us

2008-09-04T05:42:00.002+01:00

"To the families of special needs children all across this country, I have a message for you. For years you've sought to make America a more welcoming place for your sons and daughters and I pledge to you that if we're elected, you will have a friend and advocate in the White House".

Tomorrow, Republicans will be crowing about a lot of the great "lines" that were in Sarah Palin's speech.

Tomorrow, Democrats will be bashing the Republicans.

But tonight I rejoice that someone who will spend her life "walking the walk" of raising a child with special needs may end up having the ear of the President of the United States. The lines quoted above were heartfelt and spoken with a sincerity seldom heard from any politician.

If Sarah Palin doesn't win this election, I want to hire her as an advocate for our next IEP meeting. And as all of you who have gone to IEP's know, an advocate's job is at least as tough as being Governor any day.

Labels

2008-08-21T21:55:00.001+01:00

photo credit-kingnixon
creative commons license

In preparing for our recent cross country vehicular jaunt (i.e., vacation/holiday) I faced a bit of an ethical dilemma. The US National Parks Service offers a variety of different passes that are valid for admission to all national parks and forests. Besides these annual passes, it is also possible to purchase access for a limited period of time (usually 7 days) for a discounted amount.

I had been vaguely aware of the Access Pass from a local autism online group. The Access Pass gives free lifetime admission to the parks to those with permanent disabilities (along with up to 3 other people traveling with them in the same non-commercial vehicle). I hadn't thought about it much, but now took the time to consider it.

Was Buddy Boy permanently disabled? I have taken the tack of presumed competence, and thus proceed assuming he will continue in school, get a job, and be able to live independently. Would I be "giving in" if I had him labeled as having a permanent disability? Would I be lying to myself from here on out if I said I was presuming competence, but at the same time presenting a card that said that Buddy Boy was permanently disabled?

When we first knew that Buddy Boy was different, I had at least moderate resistance to placing any sort of a label on him. What advantage would it confer? And at what cost? At first I thought that the costs of placing any sort of label on him (ostracism, bullying, presumed incompetence by the schools) far outweighed the potential advantages (identity, and knowing he was not bad, just different). In fact, if we could have obtained educational supports for him without publicly labeling him, I might have continued to lobby for such an approach.

I have no problem with Buddy Boy knowing he is autistic. We treat it as a matter of fact thing around our house (much like we treat the fact that he joined our family thru adoption). I do wonder, though, about future implications of him having his name in official databases with a label next to it. Will it affect future employment opportunities? We cannot always predict unexpected outcomes from decisions we make.

In the end, my decision on whether to get an Access Pass for Buddy Boy was based on pragmatics. I first consulted the National Parks FAQ's regarding the pass. According to this site:

Who qualifies for the Access Pass?

The pass may be issued to U.S. citizens or permanent residents that have been medically determined to have a permanent disability that severely limits one or more major life activities.

A permanent disability is a permanent physical, mental, or sensory impairment that substantially limits one or more major life activities, such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. (emphasis added)

Surely Buddy Boy's ADHD and autism qualified him as having a learning disability (the powers that be certainly thought it severe enough to kick him out of his regular classroom and place him for awhile in a class for emotionally disturbed kids). As to whether his autism and ADHD will affect his learning permanently, the experiences of adults on the spectrum would certainly seem to bear this out. While people develop various "work arounds" as they mature, they don't magically learn not to be autistic as they get older.

That left the question of tracking him in a central database. A little asking around revealed that they don't record a Social Security number with the name, so there's no way that they can track these passes and merge them with other databases. Finally, as Buddy Boy gets older, it can always be his decision whether he uses the pass or not.

So we went with the pass. Got a letter from his doctor detailing his autism and its effects on his learning, showed up at the park and presented the letter, and got the pass with no hassle at all. It felt good to get something useful from my tax dollars, for a change.

So, first we used the pass to drive thru the Badlands

Then to visit Devil's Tower National Monument

And finally to visit Yellowstone National Park

Further photos can be found here.

When Aspies Meet

2008-08-15T00:42:00.002+01:00

So, our first full day in Yellowstone Park we went to visit Old Faithful geyser. We hung around for the 35 minutes or so until the next eruption, and secured ourself a front row seat so the kids would get a good view. Afterwards, when asked how he liked it Buddy Boy replied "I thought it would be bigger". He had seen it in videos before we left, and evidently a 100 foot (30 odd meters) tall plume of water with steam in person didn't measure up to what he thought he saw in the video. But still he liked it, and wanted to stick around until the next eruption.

We started walking around the large boardwalk that is in the general area of Old Faithful, and leads to a number of hot springs and other geyers. While we were walking, we passed another family group who had one young boy who was perhaps 10 years old or so. Buddy Boy walks up to him and says,

----------------------------

"Did you see Old Faithful?"

Other Boy (OB): "Yea, it was great. Did you see Castle Geyser? It's the one back there. It's even bigger."

Buddy Boy (BB): "Old Faithful will erupt again in about one hour."

(OB): "Castle Geyser only erupts once a day. You have to check the schedule at the ranger station. It already erupted today."

(BB): "The magma chamber must be close to the surface here. That water's really hot."

(OB): "The water's over 200 degrees."

(BB): "Only special types of bacteria and algae can live in the water."

(OB): "Castle Geyser is older than Old Faithful. You should check the sign by the building over there, so you can see it erupt next time."

(Voice from mother of Other Boy, who has walked about 100 feet farther down the walk with the rest of her family): "Jordan! We need to go."

(BB): "Wow, you're even smarter than me!"
-----------------------------------------

Now, of course, I have no idea whether Jordan (the Other Boy) was on the spectrum or not. But I really enjoyed watching the brief exchange between these two young lads. They both appeared to genuinely enjoy talking to each other. Buddy Boy does not often hold down conversations with other people (though when he does, it usually involves topics of special interest). And whether or not Jordan was on the spectrum, there was much recognizable about him-his walk, his speech patterns, the way he kind of looked at Buddy Boy without really looking at him, etc.-that resonated with me and reminded me very much of Buddy Boy.

It was also kind of cool how Buddy Boy identified another person (whether randomly or not, I don't know) who shared his interest in geysers. Buddy Boy was even impressed enough with Jordan that he payed him the ultimate compliment ("You're even smarter than me!"). Buddy Boy always insists that he's smarter than I am.

Anyway, that's how we spent our first full day in Yellowstone.

Wordless Wednesday

2008-08-13T18:25:00.002+01:00

Where in the World...

2008-08-04T04:46:00.008+01:00

Are we??

Who can figure out which state in the Continental U.S. we are in?

This is a contest. But as I am a cheapskate, on the road, and am figuring this out as I go along, I don't have anything to give away. So for the prize, for the first one to figure out where we are, I'll e-mail you some scenic views from our vacation (holiday).

Tonights clue is the picture up on top. If someone doesn't figure it out in 24 hours, I'll edit this post and add another clue.

----------------------------------------------

edit
The first guess. The first guess!

OK, Do'C got it on the first try. We actually spent the first night of our vacation in Iowa, but with apologies to any Iowans out there, I didn't take any pics that first night (though the kids and I did find a family of toads outside the motel while Liz was checking in).

Our second night was spent in South Dakota (we didn't stay in Sturgis, we actually stayed a few miles down the road in Spearfish). But that didn't matter, as the annual Bike Rally in Sturgis draws 500,000 (!) people on their bikes (mainly Harley Davidson's) to South Dakota. Our first inkling that our vacation coincided with Bike Week was in trying to make reservations. Liz found that most motels (single rooms in 2 star nothing special places) were going for $300/night!!! I was like "What!! We're not talking New York City, this is South Dakota!" We soon found the reason, and eventually found a room for just over $200/night, which still hurt.

There have been Harleys everywhere!

And amazingly, the kids don't see anything abnormal with this. Today we saw the Corn Palace in Mitchell, SD (it's a building that is covered in-you guessed it-corn! Quite a-maize-ing, actually),

As well as stopped at Wall Drug for "Free Ice Water!" as well as ice cream.

Tonight we've moved on. For a second prize (reward same as the first) this new location has unique geologic phenomena found in only 4 other places in the world. For the prize, name the place, AND the 4 other countries where these phenomena are found.

--------------------------------------

edit

Next clue.

Although there are a few scattered in other places, the 4 other countries that have significant concentrations of these geological phenomena that are located in the park we are visiting are Russia, New Zealand, Iceland, and Chile.

--------------------------------------

edit

Ding, ding, ding, ding!

We have our second winner! Niksmom is right. We saw Old Faithful erupt today (twice), as a matter of fact.

Comment of the Week Award

2008-08-02T05:20:00.004+01:00

photo credit-andybee21

creative commons license

Having been tagged by Maddy a while ago with the dubious distinction of having the "Comment of the Week" on her blog (and she, in turn, was inspired for this award by Scribbit) I hereby, by the power invested in me as the owner of this blog, and without too many further commas in this endless sentence, bestow my first "Comment of the Week" award to my fellow Midwesterner Marla for her comment on my "Kids Say the Darndest Things" post where she said:

I love it! Hey, I would be all for just 'compunicating' with our doctors. That would save a lot of time. ;)

What a little smartie.

Besides being a fellow Midwesterner and a parent to an autistic child thru adoption, Marla is a lot of things that I am not, like artistic (she has some great photos, check them out) and a natural writer who provides a window into her feelings thru her blog where she follows the adventures she, her daughter Maizie, and her husband Joe (what a great name for a husband!) have.

Anybody that can come up with a new word (Compunicating) that so eloquently describes something deserves an award.

Feel free to pass this on as you see fit, Marla. It seems to be a fairly loosy goosey award.

Kids Say the Darndest Things

2008-07-31T13:48:00.001+01:00

When I was young, Art Linkletter had a show on TV, one segment of which was "Kids Say the Darndest Things". He would interview young children (about 4-11 years old) and elicit some "unusual" answers from them.

In the spirit of that show, here are two snippets of conversation involving Buddy Boy that Liz related to me.

Buddy Boy went to his psychiatrist's office today, and Liz told Buddy Boy that he had to talk to the psychiatrist, and not just sit there and play with his Nintendo DS. So Buddy Boy went in there and after a bit said,

"So, are you like an occupational therapist for the brain?"

"Not exactly. I'm actually a child and adolescent psychiatrist."

"So do people come to you if they have problems with their brainstem?"

"No, actually, if they had problems with their brainstem I wouldn't be the right person to help them."

After a bit, Buddy Boy said,

"I know! I know! I know! Instead of talking, we could just e-mail each other back and forth!"

That's my boy. He's always thinking.

Later, when he was getting out of the bathtub, Buddy Boy asked Liz,

"Can I join the NAACP?"

"Umm, I don't know, dear. I don't know if they take child members, I'll have to look into that. Why do you ask?", responded Liz.

"Because then if someone treats me bad, I could just say I was a member."

Oh, that it were so easy. I'd have signed him up with them, as well as ASAN, a long time ago.

No More Training Wheels

2008-07-27T18:56:00.002+01:00

Sweet Pea is 6 now. Last year she briefly expressed the wish to take her training wheels off of her bicycle, so we tried it. It didn't work out so well (despite putting extra knee, wrist, and elbow pads on her, lot's of encouragement, etc.), so we put them back on.

This year she decided that she wanted to try again. So about 6 weeks ago I lowered her seat all the way down, and helped her glide down the incline on the cul-de-sac next to our home, with her feet out to the sides to keep her balance/keep her from falling. We did that for two weeks, then I bribed her to put her feet up on the pedals while I started her off and had her glide down the incline.

Well, one thing's led to another, and after two trips to a local parking lot with an ever so slight incline to it, I can say that those training wheels are off for good.

Sweet Pea still doesn't have quite enough control for a trail or a sidewalk, but she can start herself, turn, and control her bike better every time. Her confidence (fashion sense?) is such that she refuses the extra protective pads, and her competitive nature on the last outing had her complaining that Buddy Boy was pedaling faster than she was.

Buddy Boy, for his part, was being a great older brother. He demonstrated various things to her (like how to keep your pedals level while you're turning so they don't catch the pavement and dump you on the ground) and did a good job of keeping far enough away from her so that she didn't feel like she was going to crash into him. I also took the time with Buddy Boy in the parking lot to work on such skills as looking before you turn, signaling, and pedaling while standing up.

I must admit to feeling a bit of a pang during our last outing. My baby girl is growing up, and we'll never raise a baby again. Soon she will tire completely of her parents, and be primarily involved with her peers instead of us. While I have some inner trepidation that Buddy Boy will not be able to live independently, I also fear that Sweet Pea will grow up too fast, and leave too soon. She already pushes limits constantly, considers herself the center of the universe, and can pout and throw a fit like the hardest core 'tweens around.

Meanwhile, summer carries on, with the kids going to day camps and us going to festivals and carnivals. Life is good. Soon we will depart on our annual vacation (holiday). It's really a shame that kids don't realize how good they have it. What I wouldn't give to have a summer filled with playing outside, going to camp, ice cream, and no school or work.

Ribbit From the Headlines (aka Kneedeep in Controversy)

2008-07-23T22:18:00.001+01:00

photo credit-Parksy1964
creative commons license

Amongst all the commotion regarding Savage things said by one individual, Neandarthal comments from a Canadian source, and initial forays into genetic testing for autism, one little story seemed to slip under the radar.

Human-frog hybrids reveal autism's secrets says the headline in The New Scientist magazine article.

Human-frog hybrids might reveal the neurological secrets of autism. By fusing cells from the preserved brains of deceased autistic patients with the eggs of a carnivorous African frog called Xenopus, scientists have started investigating the way the brain cells of people with autism behave. ...

The creation of chimeras, or combinations of two different species, is not new. But the creation of animal-human hybrids is a relatively new endeavor. In 2005 Dr. Eugene Redmond went to the Caribbean to implant human stem cells into the brain of African monkeys. He hoped to get those cells to produce dopamine, and lead to a cure for Parkinson's disease. In 2007 British regulators approved human animal hybrid creation to create new stem cell lines. And now this type of research is coming to California, with little fanfair.

...To see if abnormalities in neurotransmitter signalling also underlie autism, Miledi's team collected brain samples from six deceased autistic patients, aged eight to 39. They fused brain-cell membranes, which house neurotransmitter receptors, together with Xenopus egg membranes. As a control, they did the same thing with brain cells from patients with no history of mental disorder. ...

While some, like the Scottish Council on Human Bioethics, issued cautionary statements regarding this type of research, it would appear that most of the public goes along with this type of research, "if it might improve understanding of diseases." The Danish Council on Ethics has a nice summary of some of the issues involved, including whether certain rights would accrue to such chimeras, whether such creations could be owned, and whether they could be killed.

Evidently there have been chimeras produced in the U.S. for some time now, but ethical questions (other than public discussions regarding human cloning) have largely been ignored.

I'm not positive that I might not change my mind in the future, but as of now, I would definitely count myself in the camp of being against chimeras, whatever the purpose. While I am sure that Peter Singer would approve, as he sees no difference between humans and other animals, I see a lot of potential problems with blurring the lines of what is human and what is not.

Another thing that bothers me about this is that perhaps autistic humans were chosen to do this because they were viewed as diseased and damaged, and not quite human anyway. Therefore anything would be okay with such a population. This was never stated anywhere, but just a nagging little thought at the edge of my consciousness.

I don't think that "the ends justify the means" in the vast majority of circumstances. Thus I don't believe that the results of unethical studies should ever be published, or used by other researchers as a basis for their own work. Too many scientists forge ahead to be the first in their field, and don't stop to consider whether what they are doing is right or not. I think the least we owe ourselves and our descendants is a full and honest discussion of the ethical concerns of such research. Just because we can do something doesn't necessarily mean that we should.

Old Dog, New Tricks

2008-07-16T23:22:00.002+01:00

photo credit-Avolore
creative commons license

Well, I did it today. I registered to go back to school.

One would think that after spending most of my adult life in either higher education or advanced training, and after reaching an age where I should be actively planning my retirement, I would have more sense than this.

Perhaps I am addicted to education. Or is it just Pomp and Circumstance?

Over the last 2 years my interest in bioethics has increased. I regularly attend and participate in a monthly ethics conference at my institution, and have done some reading on the subject. We have discussed such issues as the exhibit of human bodies in Body World, sham surgery, and the "Ashley Treatment". So I have decided to formally add some credentials to myself in the area of bioethics.

Rather than commit to a full Master's degree at this time, I am starting with a certificate program, in which I will take 4 Master's level 3 hour courses, followed by participating in a 5 day seminar in Chicago. If I like it (and still think it's worth the money), I can apply those courses towards a Master's degree in Bioethics, for which I would need a total of 30 hours of coursework, including a thesis.

I can't afford to take off work to do this (especially with the cost of college nowadays), so I am going to do this via an online program. So even though I work and teach about 70 hours/week, I am hoping that this won't interfere too much with my home life.

What it very well may interfere with is my blogging. Summer is kind of hectic around here, so I haven't been doing much blogging lately. But once I start school in August I suspect that my coursework may keep me offline a fair amount.

I've always felt that while blogging was good (both for me as well as for spreading a positive message regarding autism), that we were all most effective when we leveraged our connections on the net to do things in other venues.

I am hoping that my writing experience in this blog will assist me as I go back to school, and that my exposure to all of you will help me as I attempt to translate a philosophy of respect for all people back to the medical community, as well as applying that philosophy to ethical questions that occur.

So I am not closing down the blog, but don't be surprised if I am even more scarce around here once August rolls around. Know that I will often sneek peaks at your blogs, and even write some comments when I can.

Now, I wonder if I should get myself a cyber backpack to carry my cyber assignments in?

How Does Your Garden Grow?

2008-07-10T04:52:00.001+01:00

A few short weeks ago it looked like this:

Now the first cherry tomatoes have come in:

With more on the way:

Some full size tomatoes:

Carrots:

Onions:

and Beans:

The pumpkins, watermelon, and cucumbers have spread all over the place, but no fruit yet. And unfortunately, after harvesting one early strawberry from the strawberry plants, no further fruit as of yet.

But we remain optimistic.

Practical Socialization

2008-06-29T19:07:00.002+01:00

I have long felt that while supporting Buddy Boy in his socialization skills by taking him to socialization classes was a good thing, that he got just as much good (and perhaps more) from the times I have taken him to McDonald's Play Places. When I take him to a Play Place, I try to let him go out and negotiate for himself, just giving him some tips ahead of time, reviewing casually some things afterward, and intervening (and sometimes hightailing it out of there) only as necessary.

While Buddy Boy's great little surprise the other day is a "one off" for now (we're back to standard conversation mode), he did up and demonstrate a skill yesterday I haven't seen him do before.

We took our annual outing to our local park's carnival that they hold every year in June. We have to pass this fair getting to our house, so there's really no way that we can just forget about taking the kids.

Buddy Boy has always wanted to go on some of the "big kid" rides, and this year he's tall enough to qualify to ride. We went in the late afternoon. It was a pleasantly cool day for this time of year around here (about 76F/24C), and while there were some people there, there weren't a lot of older kids there yet (I imagine they all come out after dark, just like we did when we were young).

The first ride Buddy Boy wanted to go on was this one "The Egg". It's kind of like a ferris wheel, but you can lock the car so it goes upside down. Because of the way the seat belt is configured, they won't let you ride it alone. We happened to run into one of the counselors from his school, who was there with her daughter. We asked her daughter if she wanted to ride on that ride, and she said yes. So we had Buddy Boy ask her if she wanted to ride, and they rode it together.

Next Buddy Boy wanted to ride on the ride pictured up top that flips you upside down (over and over again-I think it's called "The Whiz"). This is neither my nor Liz's cup of tea, and again the ride would not let anyone ride in a car single. There was no one else waiting to ride, so we told him he could wait for someone else to come along who wanted to ride. Next came the part that surprised me.

Not wanting to wait all day to ride, and seeing a couple of older kids walking by, Buddy Boy started going up to them and asking them if they wanted to ride on this ride with him. I was flabbergasted. This was something I've never seen him do. This is the kid who doesn't know the names of most of the kids in his class (even by the end of the year), who I only extremely rarely see approach other kids at school functions and the playground, and hardly says a word if someone approaches him. Yet he initiated contact, made his wants known, and successfully persuaded another kid to ride with him on the ride (with the other kid supplying his own tickets-no bribe involved).

He not only did this once, he did it again when we returned to "The Egg" ride for another go.

Now Liz was not as impressed as I was. She quite rightly pointed out that these interactions were more in line with going up to a shop counter and asking for something (which he has done before), and not really actual give and take conversational socializing, making small talk and all. But I was impressed none the less.

I am reminded of the old joke that is often attributed to Winston Churchill:

Churchill: Madam, would you sleep with me for five million pounds?
Socialite: My goodness, Mr. Churchill... Well, I suppose... we would have to discuss terms, of course...
Churchill: Would you sleep with me for five pounds?
Socialite: Mr. Churchill, what kind of woman do you think I am?!
Churchill: Madam, we've already established that. Now we are haggling about the price.

The fact that (with sufficient motivation) Buddy Boy demonstrates that he'll initiate conversation with strangers (kids his own age, even-much harder for him than adults) gives me hope that he already has the essentials for achieving success in high school and beyond. I just have to help him identify the right motivation.

One other surprise. While I was getting him into bed he said "You know that Black girl that I rode the ride with. It was nice of her to ride with me. And she was kind of cute." I was amazed. Someone that wasn't blond? Who would of thought?

Planning Ahead

2008-06-28T02:26:00.001+01:00

buy one of these here.

In looking thru my past posts, I realize that Buddy Boy and autism are the subject matter for the majority of my posts. Since autism is but a portion of our lives, I thought I might share a little story of something that happened with Sweet Pea yesterday.

Out of the blue, Sweet Pea asked Liz who picked out the stones (headstones) when you were buried. Now no one's died recently, and I don't think she's watched something about people dying lately (I don't think they kill off characters on the Cartoon Network). So I don't know where this came from. So Liz responded with our usual "Why do you ask?", to which Sweet Pea responded that she wanted to know whether you picked out your own or someone else picked it out for you.

Liz responded something to the effect that a person might make arrangements ahead of time to pick one out, but often the person's family picked out the stone for them.

"Well I'm picking mine out right now. I want a Princess stone."

I wonder if I should tell her that they can make headstones from pink granite?

Conversation

2008-06-26T06:21:00.007+01:00

photo credit-antony_mayfield
creative commons license

So, we were all sitting and watching a video tonight from the library about slavery during the 1600's in America. It was really well done, and quite fascinating. Did you know that during this time period 20% of the population of New York was African-American? And that Carolina had twice as many slaves as there were whites? I never saw any of that in my history books in school.

Buddy Boy was doing what he usually does, which is add his own running commentary (actually, it's more like interjecting facts he knows-or thinks he knows-about the subject). At one point he says "Mom, I have to tell you what I was going to tell you about before". "Can it wait?" Liz asked. "No, I need to tell you right now." "Is this something I won't like?" (we've been working on trying to get Buddy Boy to filter out some of the naughty words he likes to repeat-usually silly stuff regarding genitals and potty humor). "No, you'll like it." "OK, what is it?" Liz asked. After a pause Buddy Boy said, "That's OK, I won't tell you now." "No, that's OK, (putting the video on pause) you can tell me". "No, mom, I'll tell you later." "Why don't you want to tell me now?"

"Because it doesn't have to do with what we're watching".

I was speechless. This is the kid who loves to ramble and free associate from one subject to the next, and seemingly randomly go back to something he was discussing 3 days ago, and has real problems with taking turns in a conversation. And he had stopped and considered that maybe it wasn't the most appropriate time to discuss something. I've never been aware that he's done that before! Ever!

I thought it was way cool. No out and out prompting, no modeling, just decided to do it himself, out of the blue.

After complimenting him on being so thoughtful, we had to find out what he so wanted to tell us. It had something to do with grapes.

Rivisitare

2008-06-23T03:01:00.005+01:00

To help celebrate the inclusion of Autism Hub Bloggers at the conference starting today at the University of San Diego, Steve D of One Dad's Opinion has asked for people to revisit a favorite post that they have written in the past. For my part, I have selected this one, originally posted on February 25, 2007.

-----------------------------------------------------------------------------

On Raising Cowboys

...And them that don't know him won't like him
And them that do sometimes won't know how to take him
He ain't wrong he's just different
but his pride won't let him do things to make you think he's right...
------------------------------
from "Mama Don't Let Your Babies Grow Up to be Cowboys"
by Willie Nelson

So Yesterday I had occasion to drive 300 miles one way to another city for a function, then after 4 hours, drive back another 300 miles.

I was alone, and able to indulge some of my eclectic musical tastes. I ended up listening to some Cowboy Junkies, the Diner Junkies, and Willie Nelson (an ex-junkie).

Maybe I'm just picking up one of Krisina Chew's habits and seeing autism everywhere. But as I'm listening to Willie singing the above song I heard those lyrics, repeated the track again to make sure I heard them right, and the thought occurred to me, "I'm not raising a son with autism, I'm raising a cowboy".

And I thought (I do a lot of free association and just plain weird thinking while driving long distances alone) "I wonder if the world would understand my son better, and treat him better, if I just told them he was a cowboy?"

Cowboys have a long tradition in America, and despite a few people using the term "cowboy" in a negative sense when referring to President Bush, there is a long and deep tradition of positive attributes being attributed to cowboys. Mention being autistic, however, and there only seem to be negative stereotypes that come to most people's minds.

Cowboys are entrenched in the lore of the United States, with many of them acheiving legendary status.

Most cowboys were men, but some (like Annie Oakley) were female. Cowboys were (and are) generally people who don't talk much, and are rugged individualists. They tend to keep to themselves, and don't much care if others understand them or not.

Cowboys have a code of ethics that is looked up to so much that some have suggested a version of it be used to instill ethical business practices in individuals.

I could see it now. When the school calls to complain about Buddy Boy exhibiting some behavior that doesn't seem to fit the mold they want to put him in, I could just say something like "You don't understand, he's a cowboy." This would be all that I would have to say to convey to them that my son was different, and in a good way.

Rather than expecting him to conform to arbitrary rules they had set up, they would instantly understand (because of the shared cultural knowledge) that my son was indeed different, and was probably destined for greatness. As they had a genuine cowboy amongst their midst, they would fall all over themselvs making efforts to individualize their educational efforts, much as all of society caters to celebrities. They would also expect great things from him, and as many studies have shown, when teachers expect great things from students they tend to get them.

My apologies to any Europeans reading this. You'll have to get your own legendary figures to latch on to to get the schools (and society) to treat you and your kids better.

Mud Therapy

2008-06-21T18:58:00.001+01:00

The school year started out great, but got a bit stressful at the end. Fortunately the corollary to "All good things must come to an end" is "All bad things must also come to an end". So the year ended, and we have been getting back on an even keel.

I am descended from a long line of Eastern European farmers. My ancestors were peasants that farmed the land in Europe, and one set of my Grandparents started out in this country as farmers in the middle of Wisconsin.

So working the earth is in my genes, and you would think it would be second nature to me. Unfortunately I have not had a garden in more than 25 years (probably closer to 30). But Buddy Boy (who wants to be a farmer) had been bugging me this winter to put in a garden this year. My sister (who used to live about a mile from us, but now lives about 350 miles (560 km) from us, had Buddy Boy and Sweet Pea assist her in putting in a garden a couple of years ago before she moved. Buddy Boy loved that, especially when they harvested their crop of corn and beans.

So I relented (I actually wanted to do it myself, but was afraid of disappointing Buddy Boy if we didn't succeed in growing anything). I figured even if our crops failed, it would be good therapy for all of us to put in a garden.

The first thing we needed to do was clear an area. We selected an area at the edge of our property, fenced it in (there are tons of rabbits around here), and began to clear the grass. The first thing we discovered is that although the area where we live was once supposedly an orchard, the land is pretty much an equal mixture of clay and rock. It took us the better part of 3 days just to clear about 100 square feet (9.29 square meters). I may not have gardened much lately, but I knew that this plot of ground was not going to grow much anytime soon (I was even surprised that the grass had grown as well as it did).

So after doing some reading online, talking to my sister, and getting a consult from Daisy at Compost Happens (hey, with a blog name like "Compost Happens" she has to know a lot, right?) I decided to break up the top layer of clay and build up a bed of about 4-5" (about 12 cm) of topsoil before planting anything. I also decided to get some stones from Home Depot and lay a walkway down the middle of the garden, to facilitate access for planting, weeding, and harvesting.

Once we mixed the topsoil in and spread it all out, it was time to get something to plant. I figured we'd have a better chance of getting stuff to grow if it was already a seedling, so off to the gardening center we went. We picked up some seedlings of two types of tomatoes, cucumbers, pumpkins, watermelon, sweet onions, peas, strawberries, and some type of herb that was supposed to attract butterflies. We also got some seeds for beans, carrots (I picked some stubby ones that were supposed to do better in clay soil), and broccoli.

The beans seemed to sprout up to 4 inches (10 cm) overnight. The carrots and broccoli have also started to grow, and we even harvested our first "crop", which consisted of one small strawberry that I had to divide between the two kids. We topped the garden off with "Mr. Sun", which Buddy Boy insisted we buy when we were at Home Depot. He's always been a sucker for inanimate objects with faces on them.

Although I think a synonym that should be listed for gardening is "weeding", it's been fun thus far, as well as therapeutic in helping us all work off some excess energy. And with the problem with salmonella in tomatoes, we might even have a cash crop on our hands!

A Great Father Dies

2008-06-14T01:10:00.002+01:00

Tim Russert, 1950-2008

Tim Russert, known to most Americans as the host and moderator of NBC's "Meet The Press", died suddenly today. He was 58 years old.

He was an icon of American journalism, who asked tough but fair questions of politicians of all stripes. His interviews were always fair, and he never belittled or insulted the people he had on his show. That's pretty impressive, for someone who did it for almost 25 years.

I thought he was just a darn good journalist until I read a book he wrote, "Wisdom of Our Fathers". I received this book as a Father's Day gift two years ago. This was a follow on book to one he wrote two years earlier, entitled "Big Russ and Me". In this first book on fatherhood Russert talks about his own father, who was a sanitation worker and a truck driver, and what a great dad he was. The second book (which I received) stemmed from letters regarding fatherhood that Russert had received from readers of his first book. Russert also sprinkled in some stories regarding his relationship with his own son, Luke.

It was obvious from his treatment of the subject of fatherhood that Russert himself was doing a darn good job of being a father himself. Russert always sprinkled bits about his family into his show and interviews, and it was obvious that he placed great stock on being a good father. His son liked his dad so much that he had himself tatooed with his father and grandfather's name.

Fathers often are overshadowed in the parenting process by mothers (who are, admittedly, extremely important). I admired the way that Tim Russert reminded people that fathers are important, too. He served as a good role model for fathers everywhere. I am saddened by his passing.

Russert had just returned from a vacation in Italy with his family, which was to celebrate his son's graduation from college.

Buddy Boy's Home Photos

2008-06-11T05:11:00.001+01:00

Buddy Boy successfully made his First Communion this year, which we considered a big accomplishment. His most prized gift came from his godfather, Uncle Dave. Uncle Dave got him what Buddy Boy's been campaigning for for quite awhile-a camera.

I've uploaded the first set of photos that I'm making public from Buddy Boy's first foray into photography. These are from around the house, most taken on the first day or two he had the camera. I didn't include ones he made of the family (sorry).

Later I'll upload some ones he took on vacation. In addition to the two shots here, the rest of the photos can be found on Flickr. Enjoy!

Respite, Dolphins, Mummies, and Tractors

2008-06-07T21:24:00.001+01:00

Buddy Boy's "Memory Extractor"

I haven't been posting a whole lot lately, especially about personal stuff. Things got really hard for awhile, and it became a combination of not being able/wanting to lay out my personal problems to the whole world (I am basically the silent, keep it in, work it out yourself kind of guy) as well as using all of my spare energy to do my best to keep our family from disintegrating. School's been out for two whole weeks here. And we're finally getting back to some semblance of normalcy.

The school year started out really well for Buddy Boy. The majority of his time was spent included in a regular classroom. Buddy Boy had the best darn teacher in the whole school for his regular class, Mrs. J. His special ed class teacher (Miss E.) worked well with Mrs. J., and pushed for him to be included more this year. Buddy Boy (for the most part) rose to the challenge. Miss E. helped support him for the small amount of time when he was scheduled to be pulled out (for OT and speech), as well as for the few unscheduled times when he had problems in the regular class. Mrs. J. is famous amongst the school's special ed families for her ability to bring out the best in all of the kids in her class. I'm really glad that Buddy Boy had her this year, and sad that he won't have her again next year.

Things went so well for the first several months that I hardly wrote anything about it. I was afraid that I would jinx the good fortune we were enjoying. This was it. This was the year that Buddy Boy would turn the corner on his behavior issues and be seen by his teachers and classmates as a full, valuable member of the class.

The last 7-8 weeks of school things got progressively worse (mostly at school, but also at home). I'm not really sure why. Buddy Boy became upset at the drop of a hat. He refused to do things that didn't bother him before. He lashed out and bit a teacher (which required stitches), and hit another. Liz was literally camped out in the school parking lot, forever on call for when things happened. Some days she was called three times. Several days ended early, with Buddy Boy being taken home.

His teachers looked for causes, we looked for causes. Though Buddy Boy is now quite verbal, he could offer no insight into what was causing him distress. Liz became increasingly distraught, and lashed out at a most convenient target, me. We both felt certain that although this school has been very accepting and supporting of Buddy Boy, that the days were numbered until he was kicked out.

School ended, and we never got "the letter". You know, the official one that says that your kid has been expelled. I am still perplexed, but thankful. This leaves us with more options for next year.

Slowly, ever so slowly, we have gotten back to some sort of equilibrium. It's a big relief that we no longer have the school's sword hanging over our heads (for now). Liz has relaxed, and even gotten some more sleep. We are talking again (instead of snapping and snarling, or even worse, saying nothing). I feel like we're on the same side again.

This week I had time off, which we used to go to Chicago. One of my uncles is dying, and we wanted to see him before he did. He has worsening congestive heart failure which has reached the limits of medical management, and it is only a matter of time. How much is hard to say. This aunt and uncle have always been great to our kids. Even though they don't have a lot of money (due to having had a special needs daughter themselves, as well as lots of medical bills), they have always sent cards with a note and $2 bills to the kids on all major holidays (Christmas, Easter, Thanksgiving) as well as their birthdays. The kids love those cards.

Since we were going up there, we took some time to take the kids to a couple of museums. Chicago has great museums, though they can be a bit expensive when you're going to multiple ones. We went to the Shedd Aquarium and the Field Museum. If you plan your trip carefully, you can take advantage of several free days at the Field Museum. Unfortunately my time off didn't correlate with any of those days.

The Shedd Aquarium expanded greatly several years ago, and the kids (and us) loved it. Besides exploring several halls of fish and amphibians and watching a diver feed the fish in a huge glass tank, we saw a movie and a dolphin show. The movie was billed as a "4D" movie, as in addition to donning 3D glasses, there were air and water jets that shot out at us at various times, as well as vibrating seats. It was fairly intense from a sensory standpoint, but Buddy Boy hung in there. The dolphins were cool, especially as we got to go up after the show and get much closer to them.

The Field Museum of Natural History is like Indiana Jones' storehouse of everything he ever found on all of his expeditions. Sweet Pea was a little apprehensive about seeing mummies, but did a good job. She really liked the t-rex skeleton they had there, as well as some of the stuffed exotic animals. Sweet Pea also wasn't totally into an exhibit where they simulated you being the size of a small bug underground, but of course Buddy Boy thought it was totally cool. Liz and I enjoyed a special exhibit they had on George Washington Carver, but the kids seemed they could not care less.

We had ice cream and a ferris wheel ride down at Navy Pier, and headed back to the hotel for another night of swimming.

Having spent three days in Chicago, it was time to move on. On our way back home we took a little detour and went to Moline, Illinois. Why would we want to go to a relatively small sleepy river town for? Well, to visit the John Deere world headquarters and pavilion, of course. As astute readers of this little blog may recall, Buddy Boy has a thing for farming equipment, especially stuff made by John Deere.

While I'd love to take the Ferrari factory tour someday, I rather doubt that they'd let my 6 and 8 year old kids crawl all over them, sit in the driver's seat, push pedals and hit the switches. Yet this is just what Deere lets anyone do with their $300,000 combines, as well as their less expensive equipment. There are several pieces of farming equipment as well as construction equipment located both at their world headquarters, as well as their pavilion in town. They also have some antique tractors (which they understandably don't let you crawl all over).

All in all, it's great to be getting back to normal. I don't know what the fall will bring (in terms of school), but for now it's great to kick back a little, relax, and get back into the groove.

A Great Place to Visit, But...

2008-06-01T06:03:00.002+01:00

photo credit-metrohicKS
creative commons license

Florida is a great place to visit. There's all sorts of things to amuse and satisfy both kids and adults. There's NASA,

photo credit-http2007
creative commons license

Florida oranges,

photo credit-Viewoftheworld
creative commons license

sandy beaches,

photo credit-heather0714
creative commons license

and a park where a somewhat famous mouse lives.

But while one could certainly have a great time visiting Florida with one's kids, it increasingly seems that Florida is not a place one would choose to live with their kids anytime soon. It would seem that Florida may soon have to change their motto from "The Sunshine State" to the "We Hate Kids" state.

Christschool the other day had a great post about the Alex Barton/Portillo case that brought up issues such as the increasing use of police to handle routine school discipline problems, possible inappropriate training of such personnel, and teachers' complicity in ostracizing those who are "different" in their classrooms. This last point was also blogged by Joeymom.

As Shawn pointed out recently, there is a whole system that's at fault here, and not just the teacher (which does not absolve the teacher in any way for her part in this).

One does not have to look far to see other instances where very young children's actions in Florida schools are criminalized, rather than being addressed with behavioral intervention plans. Indeed, some see a "school to prison pipeline" that has developed in the Florida education system.

Given the undisputed facts of the Barton case and the general climate of making criminals out of young students with undesirable behaviors in Florida, I have to agree with Christschool in saying "I believe Alex, too".

I'm on the road right now, and visited with my brother and sister-in-law tonight. My SIL works as a "para" in a 2nd grade classroom. I mentioned the facts of the Barton case to her (she had not heard about the case) using a very neutral voice. She was appalled, as are many good teachers who have read about this case. Yes, I realize that most teachers are great, and really work for the good of all of their students. I also realize that most teachers work under conditions that are less than ideal, without proper supports in place. And that puts a great deal of stress on teachers.

I'm waiting for the investigation by the Port St. Lucie school district, but absent some finding (backed up by evidence) that great portions of Barton's account were made up, I believe Alex.

It's time for Florida to get on the stick, and to stick up for all of its students, not just the ones that are compliant. This means not only rightfully having sanctions on the teacher involved in this case (Ms. Portillo), but also examining the whole education process in Florida and the whole problem with criminalizing school behaviors that have no place in the criminal justice system.

Education, Survivor, and Hamburgers

2008-05-27T05:11:00.001+01:00

I think Amanda was the first to point out the recent abuse of a Kindergarten student in Port St. Lucie, Florida. And many others have since weighed in (scroll down the linked blog for a list of other posts).

I would imagine the vast majority of those who read this blog have already heard about this, where a Kindergarten teacher thought it thoroughly appropriate to have a 5 year old student stand in front of the class while his classmates were instructed to tell him what they didn't like about him. The teacher then thought it would be a good idea to have his classmates vote on whether he should be allowed to stay in the class or not.

They voted him out, by a vote of 14-2, in a move reminiscent of the American TV show, Survivor.

The vast majority of blogging on this that I have seen quite rightly call for the "teacher", Wendy Portillo, to be fired immediately.

Bev has kindly posted some contact info for key people that we can register our (polite) displeasure with.

I especially enjoyed Shawn's post at Along The Spectrum as he detailed how although Portillo's actions were especially egregious, that there was blame enough to go around to the whole system that allowed this to happen.

It has been recognized that teachers are sometimes bullies. Some teachers bully because they are sadistic, and some because they were once bullied themselves.

Bullying isn't only something that happens in schools. Increasingly aggressive managers in the workplace sometimes bully their employees, in a style of management referred to as "Hamburger Management". In this form of management, competition is stressed amongst workers, with workers constantly encouraged to be better than their co-workers, and be "winners".

While bullying in the workplace is also wrong, at least the ones being bullied are presumably adults and have the possibility of leaving to find work elsewhere. Often when pupils in schools report bullying, they are not believed, the bullying continues and often gets worse, and they can suffer long term mental health consequences.

Once again, I encourage everyone to go to Bev's blog for a list of the people you can (politely) contact to let them know that such situations are unacceptable.

Justice Delayed

2008-05-17T00:54:00.002+01:00

photo credit-densaer
creative commons license

Well, it might be a case of too little, too late for many who have been tortured at the Judge Rotenberg Center (JRC) in the past, but I'll take anything at this point.

Yesterday's Boston Globe reported that the JRC is being investigated, and that state investigators went in to the center last week and seized boxes of documents.

I started writing about the JRC about 15 months ago, but they've been up to no good for a lot longer than that. The JRC is famous for using electric shocks in autistic individuals as a form of "aversive therapy". ~~Inmates~~ "Students" at the center wear backpacks with batteries and shocking devices which ~~torturers~~ "patient care technicians" can activate at any time by pushing a button. They shock children for such things as being "defiant", or for matters as trivial as "nagging a teacher".

The state of Massachusetts has considered laws in the past to ban spanking of children, but still allows the JRC to continue its daily torture of children.

According to the Globe article:

State Police seized documents late last week from the offices of the Judge Rotenberg Educational Center in Canton that are related to a prank phone call last summer that led two students to wrongfully receive dozens of punishing electrical shocks, according to two people with direct knowledge of the investigation.

I guess all of the shocking things that go on at the JRC on a daily basis, like starvation and shocking "students" is just fine, but give some of those same "students" some extra shocks and NOW they're sitting up and taking notice.

The article goes on to say:

The collection of evidence has to do with a yearlong grand jury investigation led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley's office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

I just hope that this investigation sheds enough light on this stinkhole of a place that the public finally sees it for what it is.

Happy Mother's Day

2008-05-11T04:07:00.001+01:00

photo credit-tanakawho
creative commons license

To those that missed my post last year, it applies even more so now.

And for a bit of humor, I suggest viewing "Because I'm the mom".

Happy Mother's Day!

Eugenics With a Smile

2008-04-30T23:34:00.003+01:00

When I was younger, I used to wonder how people who lived in Germany let the Holocaust occur. Over the years, I have come to believe that it was a series of small steps which seemed somewhat reasonable at the time, combined with a sense of "that doesn't apply to me" when many things came up, and finally, a tendency to believe those in authority.

Today I think I saw up close and personal how things like the Holocaust get started.

Peter Singer gave a talk today on a local campus. His topic was "Medical Decisions in Life and Death". After watching him today, I don't think that the devil wears Prada. Instead, he wears a rumpled shirt, smiles, is generally pleasant, and advocates for things like puppy dogs and poor people, right before he tries to convince the audience that some people are more valuable than others, and killing babies is OK if their parents decide it's the right thing to do.

OK, maybe Singer isn't the devil. But it was somewhat chilling to see students sitting in the audience quietly listening while Singer glibly tried to show that the definition of death is shifting and arbitrary, and that what we should be using to determine whether someone's life is worth living is Singer's somewhat nebulous definition of "personhood" which depends not on brain activity but on the ability of the person to be self reflective. Since he doesn't believe that humans are self aware before they are several months old, they are not persons, and therefore it's OK to kill them, especially if they are disabled.

Singer started by questioning the definition of death, then used selected quotes from (and pictures of) George Bush to (not so subtly) suggest that those who oppose Singer's definition of death and personhood are right wing religious wackos. Singer then quickly reviewed several cases where people with persistent vegetative states had their feeding tubes removed, and suggested that there was no difference between removing the feeding tubes and letting them die, and actively killing them. He finished by talking about assisted suicide, and how Oregon's law is leading the way forward.

There was time for questions at the end, and after waiting a respectful 4 seconds (so it wouldn't appear that I was gunning for him) I went up to the microphone to ask him a question. I was hopping mad, and I could hear my voice shaking just a bit. I asked him how he could place so much importance on preventing what he terms speciesism (discriminating against other animals merely because they are members of different species) while he so freely engaged in disablism by advocating that parents should be able to decide to kill their children up to several months old just because they (the parents) decided selfishly that their own lives would be better, and that the child's life was not worth living. After all, when disabled adults are surveyed, the majority of them report being happy. Singer was not fazed at all, and thanked me politely for the question. He then proceeded to respond with a bland recounting of why babies weren't persons (because of the lack of self response) and how we should respect the parents' wishes. He then moved on to the next question.

I looked around the room at the audience, which was composed mostly of students. Some seemed to get the point I was making, but most just sat there.

And I think that's what happened in Germany, too, when people heard that the Germans were killing the disabled, and later the Jews.

For a much better account of how Peter Singer is up close and personal, read Harriet McBryde Johnson's account of her time with Singer here.

The Good, The Bad, and The Ugly

2008-04-18T02:58:00.001+01:00

The film, "The Good, The Bad, and The Ugly" is a complex yet wonderful western where sometimes crime does pay, and good goes unrewarded. Life has certainly been complex around our house for the last month, but unfortunately it's been far from wonderful. And the good has been far outweighed by the bad and the ugly lately.

Buddy Boy started out this year having the best year he's had so far. He loved school, thrived with being included, identified with his classmates, and seemed to really blossom. Sure there were some minor rough spots, but overall it was shaping up to be a stellar year.

Oh how quickly things can change. If things don't turn around very quickly, he'll be expelled from his school within a week or so, and I won't really blame them.

But let's get back to the good. Buddy Boy made his First Communion the Sunday after Easter. He was having some anxiety and a few outbursts in school running up to that day, but we figured it was related to the upcoming ceremony. Other than a short crying jag in the procession coming into the church, he did a great job. I was really proud of him.

About a week and a half after that, he bit his teacher. He hasn't lashed out like that in over a year. His teachers this year have been great. They believe in him, see the positive, and support him as well as just about anyone. But Buddy Boy got upset about something, and just lost it. The teacher had to go to the Emergency Room. Two years ago he would have been immediately suspended. Liz took him home when he couldn't be consoled at the school, but not only wasn't he suspended, we never received any official action taken at all by the school.

The subsequent 3 weeks or so have been escalating hell. Promising him grand rewards has no effect, and neither does confiscating his beloved stuffed dinosaurs. Buddy Boy has gotten violent with Liz at home, and she is covered with bruises. The police have been called 3 or 4 times by Liz when Buddy Boy has bolted from the house and she couldn't find him. Once he was found by the police running thru the underbrush in a park about a half mile from our house. His face was all scratched up from that.

We've had an emergency appointment with his psychiatrist, and took him off one of his meds (Prozac-which had in the past seemed to help with anxiety), which he felt may have been causing an idiosyncratic reaction. Two days later he erupted in class when he found out that after the chicks hatch from the eggs they're incubating in class, the chicks have to go back to the farm. He was yelling, swearing at the teachers, spitting at them, telling the teachers he was going to kill them, and for a grand finale dropped his drawers and peed all over the classroom. Liz kept him home the next day, which was yesterday.

Liz, meanwhile, is at the end of her rope. She's stressed to the max, and cries inconsolably at night. When she gets stressed she pushes people away, so it's been hard for me to try to get her back from the edge. She doesn't feel like she can home school Buddy Boy. She says that it will suck every last bit of energy out of her, and that she will not survive. I try to point out how perhaps whatever is bothering him will settle down if he gets out of school, but she is not in any kind of receptive mood right now.

Buddy Boy, for his part, is not willing or able to talk about what's bugging him. He's still perfectly verbal overall, and just says that he gets angry, and that it's all our fault. But he's adamant that he wants to stay in his school. I really don't think he's trying to get kicked out.

I have been largely protected, as I get to go to work. I've cut back on all non-urgent things so I can be home as much as possible, and have tried to manage things on the weekends, but it's not enough for Liz to rebound. She feels lost, and out of options. I have no idea where Buddy Boy will go to school if he gets kicked out of his present placement. And if he does, we'll also have to find another school for Sweet Pea. Sweet Pea has been allowed to attend the same school as Buddy Boy, which is not our home school. The school is overcrowded, and they won't let her stay if Buddy Boy leaves. We won't put her back in her home school, where the Wicked Witch of the West is the prinicipal (she's the one we spent thousands of dollars and over a year fighting with).

I keep it together because we are in the middle of a crisis, but I feel lost, alone, and frustrated as all get out. We've gone from having our best year yet, to being back at square one. I'm fairly sure that we've used up all the good will that we're going to get from the school. Liz volunteers there, which I'm sure has helped. But I know that they've got to be near their limit of tolerance. Buddy Boy went back to school today and made it thru the day without any serious incident. His regular teacher wasn't there. The substitute basically let them watch movies and play games today. Liz got to hear the retelling by his classmates of Buddy Boy's meltdown, over and over.

That's about it for now. All prayers will be gladly accepted.

Kathleen Slapped-Blogs Slap Back

2008-04-05T05:06:00.001+01:00

photo credit-azrainman
creative commons license

I had heard of SLAPP suits (Strategic Lawsuit Against Public Participation) before in the context of lawsuits against environmental groups, but had never really paid much attention to them. Evidently the whole purpose of them is to harass people who are speaking out by costing them great deals of money to defend themselves.

I'm sure that most everyone has heard about the ridiculous subpoena that Kathleen Seidel has been served with. While it appears that she has not been sued, this subpoena is pretty much an all encompassing fishing expedition meant to pursue one purpose, and one alone-silencing Kathleen Seidel.

No one could reasonably believe that there was some grand conspiracy that involved paying off Kathleen to write her blog on neurodiversity.com. I do not know Kathleen personally, but there is absolutely no indication that she is being put up to write the things she does. How do I know this? Because there is no way anyone could ever write so elegantly, so powerfully, and so honestly if they were being paid.

Paid product pushers and plants on blogs make themselves known over time. They can't help themselves. They post obviously false things that support certain products or positions, in contradiction to all the evidence that there is to be found.

Kathleen is the polar opposite of someone who is paid to write from a certain perspective. When I found out that there was a name for why my son was having so much difficulty with peers and at home, and that that name was autism, I went searching for information on the web. I first found a local listserve where parents had an ongoing pity party, and most were in search of a holy grail cure. I continued to search, and rapidly came across three different sites on the web that greatly influenced me. These were Kristina Chew's AutismVox, The Autism Hub, and Neurodiversity.com. I loved these sites for different reasons. Kristina for her personal touch, The Hub for its diversity of opinions, and neurodiversity.com for its obviously well researched list of resources and readings on autism. I spent days delving through the articles and resources linked from the site. I felt like I had discovered a cave full of jewels, and I marveled how each one of them sparkled as it was held up to the light. Such sites are not put together by those who are paid to push a certain viewpoint (If she were being paid, there would be much less content, and a lot more "splash" to the site). The beauty of neurodiversity.com is in the layers upon layers of painstaking research that went into putting it all together.

Kathleen's blog has always been top notch. She doesn't push vague conspiracy theories with no facts behind them. Instead she publishes extremely well researched, well annotated (a rarity on the web), and well written treatises on subjects related to autism. A victim of her own success, the existence of this precedent setting subpoena speaks to how well Kathleen's voice is being heard. Evidently she must be silenced.

Many bloggers have stepped up to symbolically link arms with Kathleen. In whatever small way I can, I am proud to join them. Kathleen's voice is one that we cannot allow to be silenced.

Many (including probably myself) would have been intimidated by such harassment. To her credit, Kathleen didn't even flinch, and has fired back a motion to quash the subpoena. You go, girl. They've SLAPPED the wrong woman.

Evidence of Idiocy

2008-03-30T06:03:00.002+01:00

As if she hasn't done enough damage, I ran across this on another list that I am on:

FOR WORLD AUTISM DAY: APRIL 2 – Jenny McCarthy & David Kirby for a full
hour on LARRY KING LIVE

Wednesday, April 2

On World Autism Day, the controversy over vaccines! Do they contribute
to autism, or is there a greater risk going without? Actress and mother
of an autistic child, Jenny McCarthy, debates the issue with medical
professionals.

Now Larry King doesn't strike me as being very balanced on this (he has had Jenny on several times regarding autism). But the one good question he did ask recently was regarding adult autistics, to which Jenny responded that she'd never met any. Since King is basically a celebrity junkie and not a journalist I guess I can't blame him for going with B grade celebrities that will boost his ratings.

I guess the only good that might come of this upcoming show is that eventually even people that are not really paying attention will start to get the message that Jenny is a total air head, and has absolutely no science or reason to back up her beliefs.

On Larry King's website:
http://www.cnn.com/CNN/Programs/larry.king.live/
if you go to the April 2nd show, there is a button where you can submit questions for the guest (I guess it's cheaper to have the audience make up the questions rather than have a researcher). I'm counting on the "medical experts" on the show to carry the factual side regarding vaccines, so I asked

Jenny,

Do you still believe that you are an "Indigo Mom" and your son Evan is a "Crystal Child"? If so, what do you base this on?

I encourage everyone to go there and submit your own questions. I don't even want to comment on Kirby. He seems to have the minimal intelligence necessary to know that he's totally screwed up.

Trump Card

2008-03-25T03:17:00.000Z

photo credit-iboy daniel
creative commons license

Kristina Chew got me thinking today with her post on "Race, Diagnosis, and Identity". In it, she talks about her son Charlie's biracial (Asian/Caucasian) heritage, as well as his other difference, his autism. Kristina also references an article by Peggy Orenstein in the New York Times Magazine called "Mixed Messenger", which discusses Barack Obama's biracial status as a candidate, and being biracial in America today.

When Liz and I were contemplating adoption, we thought long and hard about whether to adopt trans racially or not, which race children we would accept, and what sorts of disabilities we would accept (our children, Buddy Boy and Sweet Pea are biracial African-American/Caucasian). It all sounds so clinical, cold, and calculating, but that's what the adoption process asks of you. You are forced to fill out forms stating what types of children (sex, age, race, disabilities) from what types of parents (drug abusing, smokers, psychiatric issues) you are willing to accept for placement.

I knew that kids who had been adopted often had some issues to work thru regarding having been adopted, and I also knew that kids who had been adopted trans racially sometimes were OK with it, and sometimes felt very much like outsiders amongst their own race when they grew up (and resenting their parents who raised them). I always figured that issues of race would rank high within our family as our kids grew up.

Although our kids are both black and white, I realize that in many places and situations in American the "one drop" rule applies (as long as you have one drop of black blood in you, you are considered black). I knew that even though Liz and I would try to do things to make our kids feel comfortable with their racial identities, that we would most likely not be able to do this fully, and perhaps not even well. And I didn't want to cheat our kids in this very important aspect of their lives. On the other hand, I knew that there are more African-American and biracial African-American children waiting for adoptive parents then there are minority parents waiting to adopt. Thus the choice wasn't necessarily between our kids going to an African-American or biracial couple rather than us, but rather perhaps having to wait much longer to be adopted (or not being placed at all) or being placed with us.

I also worried about how African Americans would accept us as a family. I knew that part of having them grow up being comfortable in their skin would involve us seeking out relationships with African Americans, and I didn't want our kids to see us getting the cold shoulder from black people. This, it turns out, was a totally unfounded fear. Once we adopted our kids an amazing thing happened. I have never felt anything other than acceptance (and even love) from African Americans I know.

So I guess the bottom line was I expected that issues of race would be foremost with us as a family, followed by issues with adoption. Little did I realize when I started this journey as a dad that autism would trump both of those (at least for Buddy Boy). For the last 5 years autism has made my previous concerns regarding race and adoption fall completely to the wayside. I still worry how issues of race will affect my children in the future (as well as my ability to prepare them for the discrimination that they will feel once they leave the protective cocoon of being accompanied by their lily white parents). I also worry specifically how issues of autism and race will interact in the future with Buddy Boy. One of the biggest fears I have involves Buddy Boy having a meltdown as a teenager, and being perceived as an "angry young black man" by a police officer, and being arrested (or worse) because of the interaction of his disability with his race. Orenstein in her article mentions

A few weeks ago, while stuck at the Chicago airport with my 4-year-old daughter, I struck up a conversation with a woman sitting in the gate area. After a time, she looked at my girl — who resembles my Japanese-American husband — commented on her height and asked, “Do you know if her birth parents were tall?”

While I don't think anyone should have to suffer other's assumptions about their children, given the choice of someone assuming Buddy Boy was adopted internationally vs. someone assuming he was a gang banger, I'd take the first assumption in a heartbeat.

But for the last several years learning to deal with all the myriad aspects of Buddy Boy's autism (and more importantly, fighting against a system that wanted to label him as behaviorally disturbed for education purposes rather than autistic) has consumed most of our energy on a day to day basis.

I know that with Sweet Pea we'll still have the issues of race and adoption to deal with. At 5, she's already hit us with the "I wish my skin was white like yours" plea. While I know intellectually that statements like this are to be expected in trans racial adoptions, it sure made me feel inadequate as a parent at the time. Had living in a racially mixed neighborhood, playing with the black kids across the street, having a black babysitter, reading to them about black accomplishments, going to museums, had none of this had any effect? Had we neglected Sweet Pea's development of racial identity because of our time spent trying to get Buddy Boy into (and keeping him from getting kicked out of) a proper educational setting?

I guess in the end there are different trump cards at different times. I also know that part of being a parent is to feel constantly inadequate and not up to the task.

Don't Help Them-Arrest Them

2008-03-16T21:14:00.006Z

photo credit-piccadillywilson
creative commons license

If there is anyone left that hasn't read Bev's excellent post "I Am Joe's Functioning Label", I highly encourage you to do so. I think that the phenomenon that she describes, whereby people slap certain labels on others, and then make all sorts of assumptions about them, applies to a story I read.

According to the online version of the Kansas City Star,

The sheriff is recommending charges in the case of a western Kansas woman who sat on her boyfriend’s toilet for so long that her body became stuck to the seat.

Ness County Sheriff Bryan Whipple said Thursday he asked the county attorney to file charges against Kory McFarren for mistreatment of a dependent adult. The county attorney will decide whether any charges are brought. ...

... McFarren, 36, told the sheriff at that time that Babcock had not left the bathroom in two years, although McFarren now contends he’s unsure how long she was in there. Whipple said Thursday that judging by the woman’s condition — she had open sores on which the toilet seat would stick — it appeared she likely sat on the toilet continually for at least a month.

Now I don't know all of the particulars surrounding the story, and I'm certainly in favor of punishing those who abuse the disabled. But some things in this story don't add up to the typical "caretaker abuses person in their care" scenario.

First of all, the person being charged is described as the woman's boyfriend, not her caretaker.

McFarren said she moved around in the bathroom during that time, bathed and changed into clothes he brought her. He brought food and water to her. They had conversations and an otherwise normal relationship — except it all happened in the bathroom.

But the sheriff disputed that account: “She hadn’t bathed for quite some time, I am safe in saying. She obviously was not keeping herself up.”

McFarren said he finally called police Feb. 27 after he became worried because Babcock was acting groggy, as if she didn’t know what was going on around her. ...

...McFarren, who works at an antique store, said he has been taking care of Babcock for the 16 years they have lived together.

So, they live together for 16 years. Since there's no mention in the story, I'm assuming that this is the first time that the authorities are being called to intervene in this couple's life.

Certainly the girlfriend has problems that need attention. But it sounds like the boyfriend and her had some semblance of a healthy relationship, though extremely odd by conventional standards. And it sounds like when the boyfriend perceived there was really trouble, he called for help.

To make matters worse, it sounds like the sheriff doesn't consider the boyfriend to possess full capacity

“The unfortunate thing is this truly is a case of two people, in my opinion, with diminished mental capacity,” Whipple said.

So why did the sheriff want to press charges?

He (McFarren) insisted that he tried to coax her out of the bathroom every day.

“And her reply would be, ‘Maybe tomorrow,’ ” Whipple said.

OK, so they live together for 16 years without having any obvious problems. Both parties have some issues, and boyfriend exercises some poor judgement in when to seek assistance for his girlfriend (though there is no contention that she wanted any outside help). Since McFarren (the boyfriend) holds down a job, he is assumed to be able to fully make all decisions that not only affect him, but also another adult.

And the sheriff comes in and sees something which he considers too weird, and wants to press charges.

Doesn't the county have any psychiatric social workers?

Addendum-I missed the fact that Casdok had already blogged about this. Please see here for her take on this story.
Joe