Club 166

Milestones

2012-11-27T04:12:00.000+00:00

photo credit-Tim Green
creative commons license

Life is full of so many milestones for your kids-the first time they roll over, crawl, and talk. Some kids hit all of their milestones "on time", some are delayed, and some never hit certain milestones. Others, they hit some other milestones...

like the first time they're admitted to an inpatient psych unit.

Buddy Boy is almost 13 now, and his behavior has become more problematic since this last summer. He's been not only much more argumentative, but more angry (screaming, yelling obscenities, and sometimes hitting, kicking, and throwing things). We've figured it was the result of puberty kicking in, and old medication regimens becoming ineffective. Besides his autism and ADHD, Buddy Boy also carries a psych diagnosis, and has occasionally had suicidal ideations since he was at least 4 (it really hurt to write that last sentence).

We've been working with Buddy Boy's psychiatrist to get him evened out, but mounting behavioral problems (with daily calls from school) finally led to a mutual agreement that led to him having "homebound" school starting in mid-September. We still haven't had an IEP to chart a future for school.

Over the weekend Buddy Boy was perseverating over an erector set project that we've been working on. The kit is a bit above his level, but he's been wanting to do it, so we've been helping him alot. Saturday Buddy Boy announced that we promised him we would complete it by the end of the weekend (neither of us had promised this, but he insisted). I worked two hours on it with him on Saturday, and another two hours on Sunday. Today he managed to finish it, but it (a motorized forklift) didn't work right.

When Liz pulled into the garage from picking up Sweet Pea from school, Buddy Boy was standing in the garage, reeking of the smell of week killer. He spit two batteries out of his mouth before starting a tirade against Liz, telling her how this was all her fault, and that he had drank a cup of week killer.

Liz grabbed the week killer and Buddy Boy, told Sweet Pea to stay in the house, and sped to the Emergency Department (ED). She rightly judged that she'd get there quicker driving him than calling and waiting for an ambulance. She called me from there, where I joined her.

In the past, Buddy Boy has threatened to do things like cut himself, but we've always been able to fairly easily and quickly talk him into putting the knife down.

When I got to the ED, Buddy Boy was sitting on a cart, with a fairly angry look on his face. He told me couldn't wait to get out of there, so that he could really get back at us. Evidently he had repeatedly voiced to the doctors at the ED that if he went home, he would repeat the same thing. So they wouldn't release him. He admitted after awhile that he hadn't swallowed any batteries (he initially claimed he had, so they had to x-ray him), but still said he drank "some" of the weed killer, though from talking to poison control he was showing no signs of it.

He remained relatively calm until we took him to the unit. They insisted he take off his "Ben 10" wristband, and he was told that neither of us could stay with him. He lost it, screaming, crying, saying he wanted to go home. Liz held it together, though it had to have been one of the worst days she's had. She's only been away from him for a total of 4 nights since he was born (two to attend the out of state funeral of her mother, and two to take a short trip to see a friend). I've been away to at least one conference a year, but still it will be hard tonight.

I'm just hoping he can get it together enough to get out of there quickly. We've done anything to avoid inpatient placement, as I just don't believe in a "good" inpatient setting.

Prayers and well wishes welcomed.

If They (She?) Only Had a Heart

2012-08-18T05:18:00.000+01:00

photo-Thomas Hawk
Creative Commons license

In "The Wizard of Oz" the Tin Man joins Dorothy, the Scarecrow, and the Cowardly Lion on a journey to Emerald City to see the Wizard, in hopes of obtaining a heart. Paul Corby probably wishes all he had to do was stand up and fight a wicked witch. Instead, he had to submit himself to a committee of people that dole out hearts for transplant at the Hospital of the University of Pennsylvania (or HUP, as they like to be called).

Usually the committees that decide whether you are "qualified" to receive a heart are fairly secret. People within the institution may know who they are, but they don't usually put their names out for public consumption. Such committees that dole out scarce medical resources have a long and storied history. The original such committee was formed in Seattle when kidney dialysis first became available in the early 1960's. This committee, dubbed "The God Committee", made decisions on who should be lucky enough to receive dialysis based at least partially on social factors (who had the best job, good character, etc.). In later years the public was appalled by their somewhat arbitrary means of choosing who would get dialysis (live) and who would not (and would die). Modern committees that decide who gets scarce solid organ transplants (hearts, livers, lungs, kidneys) have drawn up criteria that make things somewhat more objective (severe heart failure, low levels of oxygen, etc.). Also included in the criteria are some "softer" things such as the ability to undergo complex medical treatment and emotional stability.

It would come as no surprise to anyone who has had to deal with the stares and snide remarks when you go out in public with an autistic person that the committee to dole out hearts at HUP declined Paul Corby as a suitable candidate. Because, well, Paul's autistic. Which means he probably appears to those who first meet him as a bit odd. Maybe even scary. Because he's different. Liable to talk louder. Or perseverate a bit. Dr. Susan Brozena, a cardiologist at HUP, sent Paul's mother a letter that said

"I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."

There was no indication that the group of people (if indeed, it was a group that decided. There is some indication that Dr. Brozena consulted with only one other doctor) who decided this did not consult with anyone who actually treats autistic patients to determine his suitability to undergo treatment. Dr. Brozena evidently feels that it's much easier, when a scarce organ is involved, to go for either money or fame, rather than to try and give out organs equitably. In a scandal at Los Angeles' UCLA Medical Center, four members of the Japanese Yakuza received organ transplants, allegedly jumping ahead of others on the waiting list. Two of those Yakuza later donated $100,000 each to the medical center. I'm sure HUP realizes that Paul Corby doesn't have that kind of scratch laying around ready to donate to them. Which is perhaps why they wish he'd JUST GO AWAY. Again, from the letter

...if you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.

Autism is not a death sentence. Unless, of course, it's combined with a failing heart, in which case it's enough to get you disqualified for a chance at a cure.

Other stories on this subject can be found in The Washington Post, New York Daily News, Strollerderby blog, and Wesley Smith's blog.

A change.org petition on this is located here.

HUP accepts comments here.

If you'd like to contact Dr. Brozena and let her know your opinion, her published email address is:

brozenas@uphs.upenn.edu

Her other published contact info is as follows:

University of Pennsylvania Health System
Heart Failure/Transplant Program
6 Penn Tower
3400 Spruce Street
Philadelphia, PA 19104

Office: (215) 615-0812
Fax: (215) 615-0828

I think that Dr. Brozena needs to know that it's OK to change her mind.

Say it Ain't So, Joe

2012-07-25T06:20:00.000+01:00

Arrrrrggggh ...

After hearing of the horrendous shootings in a Colorado movie theater, I mentioned to my wife Liz that "At least no one has mentioned the 'A word'". "What?" she said. "You know, said that the shooter was autistic".

The next day, I hear that news commentator Joe Scarborough said,

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

While I've come to expect such drivel from uniformed people that lump all seemingly similar things together, do I really want to get the same stuff from someone who is the father of someone on the autism ~~scale~~ spectrum? No.

Well, old Joe felt the heat after his comments, and has backpedaled.

But that's not what bothers me.

What bothers me is that Joe Scarborough has outed himself as one wholly disconnected father. I mean, come on. Who that has someone autistic in their family refers to them as being on the autism scale? I mean, what responsible parent hasn't been to enough IEP meetings, read enough literature, talked enough to know that it's the autism spectrum? And who, who has a son that struggles to be understood and to fit in, would even think of associating autism with what happened in Colorado? I mean, how exactly will such comments lead to greater understanding and acceptance of those who are autistic?

Joe's phoning it in. It appears he's the dad that mothers all complain about. The one that disengages, backs off, and lets mom handle it. The ugly, stereotypical disconnected dad.

I'm sorry for Joe, and more sorry for Mrs. Scarborough and their son.

One small step for man ...

2012-06-30T05:50:00.000+01:00

Many times, it's not the big things in life that make it worth it, but the seemingly smaller, more ordinary ones. Such is the case this week.

Buddy Boy is now 12.5 years old. We have tried to teach him to tie his shoes in past years, but never really had success. Even though we really didn't push all that hard, it has been "one of those things" that has led to a lot of consternation and frustration all around. Buddy Boy seemed to get to a point where he decided that he would NEVER be able to tie his own shoes. But like riding a bicycle, I felt that that was not so, as he had plenty of dexterity, both to play video games as well as build all sorts of cool things with LEGO kits. He can follow instructions for the LEGO kits pretty well, too.

We last took Buddy Boy shopping for shoes near the end of the school year. It was obvious that there were extremely limited styles available in Velcro strapped shoes in his size (like 3 pairs over 6 stores). We bought the style he liked the best of the lot, and resolved that THIS would be the year that we made a push to get him tying his own shoes, as we knew he would be much happier with the wider selection of really cool shoes out there.

We decided to wait until after our vacation, to give Buddy Boy time to relax after the stress of the school year. Well, after a bit of resistance/bribing/coaching/reinforcement over the last two weeks, VOILA'!

Buddy Boy is now officially able to tie shoes! He is to the point where if he doesn't get it the first time, he is able to start over, self correct, and get it right the next time. This is a HUGE accomplishment.

Life is good (even if it's more than a bit HOT lately).

A Hero in New Jersey

2012-04-29T06:18:00.000+01:00

I've seen a lot of stories that have almost made me come out of blogging hibernation. But this one just speaks to me, on many different levels, that I had to put my 2 cents in.

Stu Chaifetz is a divorced 44 year old dad that lives in New Jersey. His 10 year old son, Aiken, lives mostly with him. I don't know what he does, but he strikes me as a "regular guy" that finally got fed up with being run around by the system, and found an effective way to get to the bottom of what was bothering his son, and correct it. I highly encourage you to watch this video if you haven't seen it yet.

A couple of things strike me about his story, and how he responded to the school system and the teachers. First of all, he saw behavior that was atypical for his kid. Aiken never lashed out, but all of a sudden was reported to be hitting teachers. I think most school systems are similar across the country. No matter how "good" the school system is, the individual child is assumed to be the cause of the child's behavior, and the thought that it could possibly be from something happening in the school environment external to the child is never entertained (We're Professionals, We Can Do NO Wrong). Stu tried to work with the system (he, like the rest of us, was left little choice). He went to meetings, revisited the IEP, tried to institute revisions of the behavioral plan after a specialist observed his son. But things still didn't feel right to Stu, so he dropped a small audio recorder in Aiken's pocket, and sent him to school.

Now, if a kid was randomly being harassed by someone at the school, it might take weeks to catch that person in the act. But Stu caught this in one day. ONE DAY. Which tells me such things were happening MOST DAYS. Rather than being in a nurturing environment, Aiken is told to "shut his mouth" and called a bastard. His teachers (by this, I include whoever it was-teacher or aides-that are caught on tape) display no sense of proper decorum, and instead exploit Aiken's anxiety regarding going to his mother's for the weekend by taunting him.

I have long advocated for audio visual recording in all public areas in a school, tapes of which would be available for review to parents and outside neutral parties whenever an "incident report" was filed on a child. Audio and video recordings are great "neutral" observers. Just ask Rodney King, as well as the truck driver that was senselessly pulled from his truck and beaten after that incident 20 years ago. Incidents like what happened to Aiken surely take place every day across this country. I am sure that most teachers are good, hardworking and dedicated to the welfare of their students. And I suppose that although most of them might initially feel uncomfortable knowing that their actions were subject to review, most would also realize that such tapes could also be used to exonerate them if they were falsely accused.

My son Buddy Boy was almost expelled from Kindergarten 6 years ago, mostly because the principal of the school had it in for him. It took nearly a year, a lawyer, and lots of money to straighten that out, but after being transferred to another school, he did fine.

Stu Chaifetz has repeatedly said that he's not at war with the school district. He's even said that he doesn't want to sue the district. He only wants what each of us would want for our child-justice. He wants an apology, and he wants those involved to find other employment. Unfortunately, the teacher from the classroom has been reassigned to the high school. Stu, unsurprisingly, is steamed, and has started lobbying the state legislature to pass a law to try to prevent such a thing from happening again. Meanwhile, Aiken's former teacher has hired a lawyer and threatened to sue Stu. Stu has basically said "Bring. It. On."

I wouldn't bet against Stu in that matchup.

Missing Important Social Clues

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

Photo credit-topgold
Creative Commons License

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

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

Take David Geier, for instance.

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

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

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

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

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

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

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

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

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

The Pigeons Have Come Home to Roost

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

photo credit-Eric the Fish
Creative Commons license

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

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

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

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

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

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

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

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

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

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

Joe

Your Guest Speaker Has Arrived!

2011-01-06T03:46:00.002+00:00

photo credit-SeaDave
Creative Commons license

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

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

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

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

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

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

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

Joe

Christmas Spirit, and New Year's Resolution

2011-01-01T03:04:00.006+00:00

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

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

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

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

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

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

If only the world worked that way.

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

Random Thoughts

2010-11-21T01:00:00.000+00:00

photo credit-moreno finotto
creative commons license

Did you know...

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

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

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

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

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

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

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

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

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

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

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

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

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

"How about machinery?"

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

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

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

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

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

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

G-d bless Mrs. C.

Joe

"If That"

2010-10-31T06:28:00.003+00:00

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

Bad News! We came home to find this letter:

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

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

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

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

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

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

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

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

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

Joe

TV Psychologist Gets It Right

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

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

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

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

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

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

Walsh quickly followed with

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

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

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

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

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

U.S. Seclusion Bill Alert

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

photo credit-David Paul Ohmer
creative commons license

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

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

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

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

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

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

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

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

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

How to Call Your Senator

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

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

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

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

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

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

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

Honesty, Justice, and Trust

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

photo credit-navets
creative commons license

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

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

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

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

Tybee drops charges against autistic teen

WTOC11 reports that,

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

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

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

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

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

An Inconvenient Truth

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

photo credit-newagecrap
creative commons license

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

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

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

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

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

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

Georgia Scores a Hat Trick

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

photo credit-thebigo
creative commons license

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

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

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

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

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

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

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

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

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

Geogia-Zero Tolerance for Differences

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

photo credit-centralasian
creative commons license

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

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

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

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

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

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

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

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

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

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

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

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

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

So why would a school do such a thing?

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

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

Walking While Black and Autistic

2010-03-26T05:29:00.000+00:00

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

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

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

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

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

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

Temple Grandin BBC Documentary

2010-02-17T21:08:00.000+00:00

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

Here's the trailer from the HBO movie:

Trailer

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

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

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

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

Part 2:

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

Part 3:

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

Part 4:

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

Part 5:

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

Murphy's Law

2010-01-25T02:20:00.003+00:00

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

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

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

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

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

The Nail That Sticks Up...

2010-01-16T04:31:00.003+00:00

Will Be Hammered Down.

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

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

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

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

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

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

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

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

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

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

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

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

Now, before it's too late.

Sleep

2009-12-11T02:56:00.002+00:00

photo credit-Jun's World
Creative Commons license

Sleep.

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

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

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

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

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

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

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

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

Wow! The Trib Gets It Right

2009-11-24T06:04:00.001+00:00

photo credit-Todd Baker
Creative Commons license

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

I am happy to say that I was wrong.

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

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

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

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

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

Stars and Rain

2009-10-29T03:42:00.003+00:00

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.