Friday, December 11, 2009


photo credit-Jun's World
Creative Commons license


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.

Tuesday, November 24, 2009

Wow! The Trib Gets It Right

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.

Thursday, October 29, 2009

Stars and Rain

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.

Sunday, September 27, 2009

Dear Mr. Springsteen

photo credit-uchiuska
creative commons license

Below is the letter that I just e-mailed to Bruce Springsteen's publicist at . 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.


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.

Wednesday, September 23, 2009

When Will They Listen?

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.

Tuesday, September 22, 2009

But At Least It Would Be a Graceful Death

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.

Friday, September 18, 2009

Dogged Perseverence

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.

Wednesday, September 16, 2009

All You Need Is...

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.

Wednesday, September 9, 2009

Liverpool-More than the Beatles

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.

Wednesday, August 26, 2009

What an Autism Organization Should Be?

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.

Sunday, August 16, 2009

A Quick Resolution

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:


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 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.

Ari Ne'eman
The Autistic Self Advocacy Network

The Letter I've Written

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.



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

And the contact person is Amy Wallace.

Friday, August 14, 2009

Could We Have A Little Originality, Please?

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.

Monday, August 3, 2009

"You'll Always Know Your Cow"

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.

Saturday, August 1, 2009

When Did Niagra Falls Get So Tacky?

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.

Sunday, July 26, 2009

Missed Signals

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.

Thursday, July 23, 2009

Obamacare and Disability

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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?

Friday, July 10, 2009

A Sad Case

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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.

Thursday, July 2, 2009

Skate x Skate


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.

Sunday, June 28, 2009

Call Me Ishmael

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.

Sunday, May 31, 2009


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?

Trinity Lutheran Church
Volunteers serving the homeless
First course: dignity

Read the story behind the ad.

Friday, May 15, 2009

I Can See Clearly Now

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.

Thursday, May 7, 2009

Just Claim They Were Autistic

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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.

Tuesday, April 28, 2009

Where the Rubber Meets the Road

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.

Thursday, March 19, 2009

Spring has Sprung

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.

Monday, March 2, 2009

Thinking Outside the Box

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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.

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

Sunday, February 22, 2009

Making a Difference, 10 minutes at a Time

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.