Murphy's Law

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...

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

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

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

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

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.


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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

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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?

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.