Be the machine

I’ve been trying to understand for several months why Buddy Boy wants to be a machine or an inanimate object. I think if I can “Grok” this it might help me to see things thru his eyes a bit better.

Although Buddy Boy has rarely voiced a desire to be a particular type of person (he used to always say he wanted to be a farmer when he grew up) for the past year or so he’s always wanted to be some sort of machine (or occasionally an inanimate object). When I say that I would like to have a Ferrari someday (hey, I can dream, can’t I?) Buddy Boy will say that he wants to be a fast car when he grows up. He doesn’t want to fly a plane, he wants to be a plane.

I don’t necessarily think that this is a bad thing. Buddy Boy has always had a fascination with anything mechanical. Sometimes he’s obsessed about them (he could stare for hours at conveyor belts), but mostly I think he’s intrigued by them. As long as he doesn’t totally shut out everything else, we think this is great. We took a long drive in the country a couple of autumns ago, in search of combines in the field. We found some working near enough to the road to get some pictures, and had one of the pictures made into a puzzle that he still gets out and uses today.

Sometimes I think that Buddy Boy's wanting to be a machine is just a bit of magical thinking on his part. But mostly I wonder if Buddy Boy is so into the things he likes that he totally identifies with the machine or object. In so doing, the only way to really understand the machine is to be the machine.

Sometime this identification with things is a bit maladaptive. Buddy Boy has a hard time allowing us to wash his clothes in a washing machine. He hides his dirty clothes in his favorite hiding places to protect them from the washing machine. His offered compromise is that he says we can wash them only if we hand wash them. While I think it’s great that he offers to negotiate (negotiation as a preferred method of getting something, as opposed to screaming, grabbing, and hitting are all things we have been working on), it’s just not realistic to expect Liz to wash all of his clothes by hand. So we revert to a bit of diversion and subterfuge, putting the clothes aside and promising not to wash them then. Later, when he’s not watching, we throw them in the washer. When asked by him later if we washed them in the washer, we tell him yes, and he seems OK with that.

But other than instances like this, I don’t see any real harm with him wanting to be a machine (or an object). If being so focused on something that you want to be that thing can help you understand it, then maybe the heightened understanding gained from this experience will help in designing better machines. Only time will tell. Until then, anyone with a spare Ferrari in their garage, feel free to send it my way.

Joe is 209

And Justice for All

Tomorrow (Tuesday, 27th of February, 2007) the Winkelman case is scheduled for oral arguments before the Supreme Court of the United States.

I know this may be boring to those outside of the US, but this is something that is important to all parents of special needs kids in this country. Basically, the question at hand is whether parents can be allowed to represent their children before a Federal court when cases under the Individuals with Disabilities Education Act (IDEA) are tried.

Generally speaking, only a lawyer can practice law, and one must be hired to represent you before the court. And, in an ideal world, we all would like an attorney to represent us and our child's interest when appearing in court.

There are only two problems with that. First of all is the shortage of lawyers trained in special education law. The second big hurdle, of course, is money. It costs a lot to hire attorneys, and by the time a case makes its way to a Federal court most families are going to be tapped out when it comes to raising funds.

To backtrack a little, I'll give you a short synopsis of the case, which illustrates how the system works. The Winkelmans have two children on the autism spectrum. One, according to them, was adequately educated by the local school district. The other one exhibited many "behaviors" in pre-school, and the parents felt that the school was not providing an appropriate education, and had an inadequate plan to provide a free appropriate public education (FAPE) which is the law.

The Winkelmans enrolled their son in a private school that specialized in autism, while petitioning the school district for reimbursement of the funds they were paying in tuition (greater than $50K/ year on a yearly income of less than $40K/ year). They were initially denied placement in this school, and appealed the case to a Federal court. The court has postponed deciding this aspect of the case. Rather, the court ruled that the parents could not represent their child before the court, and that they must retain an attorney. This is the only aspect of the case that is up before the Supreme Court tomorrow. Two more in-depth discussions of this case can be found here and here.

So why is this so important? Most things are decided at a local district level and never get to court, so what's the big deal?

The deck is already stacked against parents in advocating for their children's rights for a FAPE under IDEA in the LRE (Least Restrictive Environment). Anyone that has gone to an IEP (Individual Education Plan) meeting for their child knows of what I speak. Typically at our IEP's the ratio varies from 15:2 to 20:4, in terms of how many people the school district has lined up on their side vs. how many we have on ours (one or two parents, advocate, lawyer). School districts often like to make the rules up as they go along, and try to get parents to sign off on whatever it is that they (the district) want to do. If you as a parent are not fully aware of your rights and the law, it is easy to get bulldozed in the process.

If indeed you call the district out for acting badly, then they have a team of lawyers at their disposal, and public funds to pay them with. You, of course, have to pay for your own lawyer. If you and the district can't agree on a plan for your child, then you are entitled to file what's called "due process". The latest iteration of the IDEA rules spell out that if the parent's suit is judged to be frivolous or without merit, then the parents are responsible to also pay for the opposing side's legal fees.

Two recent Supreme Court decisions also tend to tilt the playing field against parents. The first is the Schaffer case, where the court decided that the burden of proof rests with the plaintiff (the family) when pressing a case against the school district. The other decision is the Arlington Central case, where the court decided that even if the parents won, they could not recover their lawyers' fees from the school district (generally speaking-but not always in civil suits, the loser is liable for lawyer's fees for both sides).

Before the court tomorrow, the school district is expected to argue that parents need to hire lawyers because a) parents are not smart enough to properly represent their children's rights, and b) if parents are allowed to represent their kids, then a flock of ill conceived and frivolous suits will clog the court system.

I hope that the Supreme Court exercises some common sense here. Most parents that would go this route are very sophisticated when it comes to knowledge and interpretation of special education law. They are also smart enough to get a lawyer if they can, but representing their child themselves may be their only choice if they cannot afford a lawyer and their is no lawyer willing to take the case for free. Also, pursuing a case in court is expensive, in terms of time and money, even without the cost of your lawyer figured in. I know that parents of special needs kids aren't going to be running out and filing frivolous lawsuits.

If the Supreme Court rules against the parents, then the deck will be stacked even higher against parents. Only the most well healed parents will be able to afford the cost of a lawsuit against the school districts. The districts, realizing this, will be able to be even more arbitrary in their decisions on what are appropriate services. And our children will suffer.

Joe is 208

Dumb?

There was a surgeon who used to work at a hospital I worked at. Had a bad accident (broadsided by a drunk when he was driving home). He had some orthopedic injuries, but his hands were fine. He almost totally lost the ability to talk, however. And when he could speak again, his speech was nearly unintelligible, even with speech therapy.

It took him far longer to return to work then it should have.

His colleagues suggested he should take disability. They seemed embarrassed to have him around. They pretty much shunned him. They didn't think patients would understand him. The hospital didn't want him back. Everyone assumed that since his speech was affected, his whole brain was damaged. Pity they could give, but not understanding.

He had to fight hard to get his job back. And that included a long time being supervised by fellow surgeons having to "prove" that he really could operate.

And I wonder, just what is it about speech, anyway?

Out of our faculties, it seems the one that is most tied to other's perception of intelligence and personhood. I mean, why is the lack of speaking ability sometimes referred to as being dumb (as in "He's deaf and dumb.")? In the 1968 movie "The Planet of the Apes" (which my quite sophisticated wife loves for some unexplained reason) Charlton Heston lands on a planet much like Earth, where the Apes and Chimpanzees talk and are intelligent, and the humans are mute and are looked down upon by the ruling apes.

If you look at people that are blind vs. people that are deaf (and also usually mute), the blind people are often much more readily integrated into "normal" society. The deaf/mute are shunted off to the fringes of society. People who don't speak are often assumed to be "dumb", not acknowledged, not taught, and not valued at all by society.

And though my son speaks (totally understandable, though his speech patterns and idioms are sometimes a bit "off") many with autism struggle with this, and some never do to an appreciable degree. This has led to many quite intelligent people in the past being labeled as retarded, and shunted off to institutions to be wharehoused. It also leads to continuing misunderstandings when autistics with limited speech venture off into society. Amanda Baggs relates on her blog many of the sometimes sad, and othertimes horrific, things which have happened to her over the years as a somewhat non-verbal autistic.

Nowadays there are assistive communication devices that are available to help non-verbal people be understood. Dr. Sanjay Gupta recently wrote of his impressions of autism after meeting Ms. Baggs, who used a voice synthesizer. And though this has helped, I can't but think that we have a long, ingrained societal understanding that those without speech are "dumb", and that it will take more than a little technology to overcome this.

Joe is 209 :(

On Raising Cowboys

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

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

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

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

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

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

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

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

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

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

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

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

The evil within

Like many, I have been saddened and sickened to read of case after case of abuse of disabled individuals. Most recently, Kristina Chew wrote once again about the aversive "therapy" used at the Judge Rotenberg Center (JRC) in Massachusetts.

I linked from that site and also read what Kevin Leitch wrote on his site here.

Dr. Israel, who heads the JRC, studied at Boston's Harvard University around 1960, with B.F. Skinner, the behavioral psychologist. His "treatments" at the JRC are loosely based on Skinner's operant conditioning theories. The list of aversives used at the JRC include such things as electric shock therapy, hitting, pinching, and withdrawal of food privileges).

I wrote recently about how eugenics has been with us since the 19th century. One would think that after WWII the world, at least all those that considered themselves "civilized" would refrain from torturing other human beings. Besides the Nazi medical experiments there were also Japanese experiments that did not receive as much press. When I was growing up I was taught that what happened in Nazi Germany was an aberration, and could never happen in the modern world.

Well, it wasn't long after WWII that a few psychologists proved that theory wrong.

Stanley Milgram, a Yale University psychologist, conducted a now famous experiment in 1961 where he got ordinary people to administer electric shock "punishments" as part of an experiment on "punishment and learning" (no shocks were actually administered, but the participants did not know this). Fully 65% of the participants continued increasing the level of shock to a level they were led to believe might kill the subject, just because they were told to.

In 1971, Stanford University psychology professor Philip Zimbardo conducted another famous experiment, the Stanford University Prison Experiment, where he got ordinary college students to psychologically and physically torture and intimidate fellow students while they were in "guard" and "prisoner" roles, respectively. The experiment had to be cancelled early (after 6 days rather than lasting the planned 14 days) because the participants were increasingly spinning out of control.

Some common themes emerge when we read about these experiments. One is that the "subjects" or "inmates" are routinely depersonalized in some manner. This appears to be essential in order to make the actions acceptable. Another is that many people will just "do as they're told", even if it's something that they normally wouldn't do on their own. Still a third factor is that many people will just "go along with the group" and not rock the boat. So if everyone else is participating in torture, well, we will too.

So it's not too surprising when Amanda Baggs wrote about what she had witnessed (or had done to her) in various institutions.

Nothing that bad has happened to Buddy Boy (yet). But a year and a half ago (when he was still 5) the school he was in "helped" him when he was not compliant by building a little jail cell out of heavy wooden chairs in a separate room, placing him in the middle, and ignoring him until he would do what they wanted. We withdrew him out of that school, and upon reentering school this year he was placed in a class for emotionally disturbed kids (most of them older than him). The standard treatment at this school (which we refused in writing to let them do to him) for non-compliance was to put the kids in either a padded room or a wooden box until they "settled down".

We're out of that place, too, and thus far things have been better over the last two months. But I can easily see that many, many people are thrown into situations that are much worse than what Buddy Boy had. And that bullying, tormenting, and torture are not just accepted, but encouraged in many schools and institutions, because people are told that it will "help" the poor, non-compliant, weird individuals who are worse than animals.

Human beings are capable of unspeakable things. And each of us must remain vigilant to those acts and attitudes that allow these things to continue.

Joe is 208 :(

Puzzling Play

So I come home to find Buddy Boy and Sweet Pea playing a game quietly by themselves.

Yes, that's right. They were playing together (which isn't that unusual nowadays), but they were playing a game, which I've never seen them do unmoderated and without a big reward involved. And to top it off, they were playing quietly. They're never quiet together. It's always running, yelling, jumping off furniture, stuff like that. Sometimes crawling around making animal sounds. But never sitting on the floor, in one of their rooms, unsupervised, playing a game.

They were playing a memory matching game. One of those games where you lay out a few dozen cards face down on the floor/table. When it's their turn, each player turns over two cards. If the two cards match (their is only one match to each card) the match goes into their pile, and they get to choose two more cards. If the two cards don't match they get turned face down again. The one with the most cards in the pile at the end wins.

Well Buddy Boy (just turned 7) was getting his clock cleaned fairly well by his younger sister, Sweet Pea (5 next month). He was making some matches, but Sweet Pea was consistently ahead of him. I guess in some ways I would have predicted that. In addition to being PDD-NOS, Buddy Boy has ADHD symptoms. So I wouldn't expect him to be able to concentrate well on remembering where particular cards were. Though he did seem to be trying, and was somewhat frustrated by the fact that his sister had more matches. On the other hand, Buddy Boy is great at remembering routes in the car, which Sweet Pea is clueless about. She doesn't recognize she's near the house until she's two blocks away. Buddy Boy, on the other hand, knows where to turn to get to important places, and when we was 18 months old recognized the specific nondescript strip mall where a favorite Chinese restaurant was located. He would start to make noise and gesticulate whenever we went past it.

So I don't think that his memory was faulty, and I'm not sure that it was all a matter of concentration, as he did seem to be attending to the task at hand well enough.

One other difference I noticed in how they played this game was in their game strategy. Sweet Pea had quickly incorporated a successful strategy of when something that she thought she knew where the match was came up in Buddy Boy's pick, when it was her turn she first turned over the card that she thought matched the one she had just seen, and if she picked correctly, then turned over the (known) card that Buddy Boy had just revealed in his turn.

Buddy Boy, on the other hand, had a much less successful strategy. When he thought he knew where the two cards were, he first turned over the (known) card that had just been revealed in Sweet Pea's turn, and then turned over the card that he thought would match it. I tried to explain to him how to use the more successful strategy that Sweet Pea was using, but he just didn't seem to comprehend what I was getting at (perhaps my description was as clear as this written one :o ).

The whole episode just seemed amazing to me on many different levels. First, to see Buddy Boy voluntarily playing a game quietly with his sister was an amazing sight. It was HUGE!

Seconly, watching Buddy Boy and his sister playing like this was fun, because I could almost see how they were thinking.

Finally, it was interesting to see how something that Buddy Boy is very good at (remembering things) didn't serve him very well in a game that is mainly about, well, remembering things.

Each task in life is usually much more complex than we appreciate. What appears a simple task often is made up of a multitude of thought processes and actions. And even if part of the process is functioning well, the other parts are necessary in order to have optimum functioning of the system.

I'd love to see more research into how autistic people learn, and if there are common ways that autistics learn. Then maybe I could teach Buddy Boy his own successful strategies for keeping up with the Sweet Pea's of the world.

Joe is 207

What goes around, comes around

If you were to bring up the subject of eugenics in conversation, I would suspect that many people would have to stop and think a bit about what you were referring to. Of those that actually were conversant with the concept, I suspect that most would associate it with the quest for racial purity taken up by Nazi Germany. Few, however, would think of the United States.

Yesterday morning I was in a local bookstore and was browsing thru the book “Choosing Naia”. I am drawn to reading stories of people’s journeys, and this book is a good one that chronicles an interracial couple’s raising of a daughter with Down’s Syndrome. The couple recount how they had taken a screening test for genetic abnormalities (including Down’s) which had come up negative. They go on to say that even if it was positive, they were going to use the information to prepare themselves to deal with it, and not to abort the child. This is backed up by the fact that when the mother again became pregnant, they decided against any prenatal testing, deciding that they already knew they could deal with whatever happened. At one point they had a slightly uncomfortable conversation with the mother’s parents centering on abortion and its use in preventing the birth of children deemed to be defective.

When I came home from the bookstore I read a piece on Autism Vox talking about genetic testing, and how some tests have intimated that they might be able to screen for autistic like behaviors.

While in college I was dimly aware of the eugenics movement in the US, but always thought it was mainly something that happened somewhere else (i.e., Nazi Germany). I’ve been reading a lot lately about prenatal testing being used to encourage parents to abort kids with Down’s Syndrome, as well as many people wondering if this is the future that will be pursued when/if definitive testing for autism surfaces. George Will has written about this subject here and here. I’ve also started looking into the history of the eugenics movement in the US, as I believe that it may have some bearing on how people still act today.

Eugenics is a social philosophy which advocates the improvement of human hereditary traits through various forms of intervention. The term eugenics was coined in England by Sir Francis Galton, a cousin of Darwin, in the late 19th century. Early proponents focused on selective breeding as a means towards this end. In the 20th century proponents included such prominent people as Winston Churchill, George Bernard Shaw, and Alexander Graham Bell.

Another more ominous form of eugenics included forced sterilization laws. The first law successfully passed in the US was in the state of Indiana in 1907, which was followed by laws in California and Washington. Eventually 27 states passed laws that were aimed at forced sterilization of the mentally retarded, the blind, deaf, criminals, and epileptics. Different states had different variations of the laws, and as many as 65,000 individuals were sterilized against there will under these laws. Although after WWII this practice faded greatly, there were still a number done into the 1960’s, and even sporadic cases as late as 1981. During the 1970’s Native Americans underwent forced sterilization, which was encouraged by government policies.

Abortion was legalized across the US in 1973. Prenatal testing enables testing for things like Down’s Syndrome and Spina Bifida. With the onset of non-invasive prenatal testing, some estimate that as many as 80-90% of fetuses with these two conditions are aborted, and many feel that the “right” to abort a disabled child has become one’s “duty”.

The OB-GYN societies of both the US and Canada are both recommending prenatal testing for Down’s syndrome for all pregnant women, not just women over 35.

So basically there has been an uninterrupted period of time from the 19th century until now where eugenics has been practiced in some form (selective breeding, forced sterilization, abortion) in the US. It’s not a new concept, but something that has been with us for a long time. And it is so entrenched in our subconscious that most people don’t really blink when they encounter societal attitudes that encourage “weeding out” so called “defectives” among us.

Joe is 208

When is a rose a dandelion?

We are fortunate that we live in a very good school district. At least that’s what I thought when we adopted our son 7 years ago. Our school district is one of the best in our area, and routinely sends a high proportion of its grads to prestigious universities across the country. Unfortunately, over time I’ve come to understand that perhaps our district isn’t as great for our son as I once thought it would be.

First of all, there’s the problem that our district is the victim of its own success. Our district has historically enjoyed such a good reputation that a higher percentage of parents send their kids to the public schools in our district than in other districts. Even though many of the families in our district could afford to send their kids anywhere, they choose the public schools because of their perceived quality. Their’s nothing inherently wrong with that, except that all of the schools in our district are now bursting at the seams with kids, to the extent that trailers are being brought in to serve as additional classroom space.

This means that rooms that were previously used as special ed classrooms are being taken over for regular classrooms, and sometimes there are two sped classes combined into one room, with cubicle dividers put up between them. Hardly an ideal setup for kids with noise and distractibility issues. Also, the school administration seems to be in constant “crisis mode” trying to deal with the sheer volume of students, and is thus not very interested in any particular individual student.

Secondly, there seems to exist what has been described at “Wrightslaw.com” as “organizational narcissism”:

…In my experience, people who work in affluent school districts are far more difficult to deal with that people who work in inner city or rural school districts. As Pam says, people who work in affluent districts are subject to "organizational narcissism." School personnel in affluent districts tend to view themselves as superior to people who work in less affluent districts. This belief is often manifested as arrogance. …

This is something that we have definitely run into in our district. When comparing notes with other parents on a local autism list-serve that I am on, it’s obvious that our district goes out of its way (more so than some other districts around us) to try to impose its wrong views on parents, no matter what. We’ve considered moving because of this, but after a year and a half of arguing (along with our advocates and a lawyer) with the district, we are to a place where things are a little better, and we definitely know the players (and them us). So we’re a bit reluctant to strike out and start all over again at this point.

Finally, I have been very disappointed by some of the responses that have been made to us and other parents of special needs kids by others in the community. We live in an area that is solidly middle to upper middle class, with some really well off people thrown in, as well as a few lower middle class. The area is solidly Democratic politically, and everyone is expected to recycle, talk about global warming (even while driving large SUV’s) and to toe the line on other progressive issues (guns, abortion, diversity, etc.).

Unfortunately, it would appear that many are very hypocritical when it comes to the inclusion and support of our “neurodiverse” kids. Some complain at school board meetings about money and space devoted to special ed kids that could be better spent on their normal kids, while others complain about the “behaviors” of some of the special ed kids that are disrupting and disturbing their own little angels.

I don’t know if there’s a point to be made here, or whether I’m just letting off a little steam. I guess if there’s any point to be made, it’s that a school district is much more than its reputation or statistics. I would certainly talk to other parents before moving anywhere new, but even then you have to take everything with a grain of salt, as there are individual personalities within each individual school, as well as the fact that each school or district may be generally good with some disabilities, but awful when it comes to dealing with “disruptive” children.

**n.b. If you live in the US and have a special needs child, I highly recommend Wrightslaw.com. It is a great site chock full of really good advice on IEP’s, advocacy, and special education law.

Joe is 208

Unintended Benefits

We have two children. Buddy Boy, who is now 7 and PDD-NOS, and Sweet Pea, who will be 5 next month, and apart from possibly being a little hyperactive, is NT.

Sweet Pea, like any 2nd child (I was one myself), is very competitive. She always wants to do what her older brother does, and is always trying to prove that she is better, faster, and stronger than her brother (or anyone else for that matter). She also resents anything that Buddy Boy gets that she doesn’t (like rewards for certain behaviors).

Last night we went to father's night at her pre-school, which she had been looking forward to for weeks ("We're learning a new song, daddy", "I'm going to be a rhino, daddy", "How many days until father's night?"). We both had a great time.

But I’m sure the time will come when she will confront us and ask us why we don’t spend as much time with her as we do with her brother. And of course try to guilt us by saying we don’t love her as much.

What Sweet Pea doesn’t realize, and may not believe when I tell her, is that one of the gifts that I have received because of Buddy Boy’s autism is that I am a better father, both to her as well as Buddy Boy. I’m not perfect by any means, but I’m sure that I’m better than I otherwise would have been.

When most kids are fairly young their parents are in the beginning to middle of their career cycles. This means that they usually are paying a fair amount of attention to their careers, and letting the home life take care of itself. Not that they’re bad people, but the nature of being on the upswing of your career is that a lot of your energy is sucked out of you by the workplace, and this necessarily limits what you have left for your kids. You rationalize it by saying that it’s equally important to advance your career (income) so that you can provide well for your family. And oftentimes half your kids’ childhood has raced by while you’re doing this.

When a crisis hits your family (and even though autism itself may not be a crisis, dealing with the school system certainly has been) you are forced to acutely reevaluate everything you do. Buddy Boy’s autism has forced me to decide what is really important.

Learning to deal with Buddy Boy’s outbursts when he was younger has assisted me in deciding what’s important. Reading Dr. Ross Greene’s “The Explosive Child” helped us to approach both of our kids in a more supportive and collaborative fashion. I’m sure that I raise my voice less to Sweet Pea because of the things I have learned about interacting better with Buddy Boy. Had I not been forced by extreme behavior to look for other solutions, I would have probably just bumbled along with my somewhat authoritarian nature.

As it became clear that Buddy Boy was going to need a lot of time on my wife Liz’s part as well as mine, both for advocacy as well as for day-to-day support of Buddy Boy, I had to make a decision. Either throw up my hands and say I can’t do any more, or do what most of us have done, and try to figure out how to best help my kid when he needed us. For me it first meant that I changed jobs within our department. I took a job with more predictable hours and more time at home. This meant less income, but the tradeoff has benefited my marriage as well as my relationship with both of my kids. Recently it has meant turning down a promotion and having to serve on the search committee to find the person who will be my boss. While I thought that we had gotten to a place where I could have handled this position without disrupting my home life, Liz did not think so. I respected her perspective, and again this will mean that I will end up with more time at home with both kids then if I had taken the promotion. We’ll have to manage without the extra money (we haven’t gotten anything more in our department than a token raise since 1998), but I’ve never heard anyone on their death bed express regrets that they didn’t earn more money.

So I hope Sweet Pea realizes that while I’m not perfect, I’ve been a darn site better than I would have been as a parent, and spent more time with her than I would have, because of Buddy Boy’s autism.

Joe is 208

How much to reveal?

The question often comes up regarding what do you say about your child’s autism. To others, the child himself (I am going to use himself instead of him/herself, as my child with autism is a boy), and siblings.

My short answer is that it depends, and do what feels right.

We have the advantage in our family of not only being the parent of a son with autism, but also of being parents thru adoption. So we’ve struggled with a somewhat similar question before.

The question of what to say, to whom, and when, seems to figure prominently in discussions of autism. Kristina Chew originally named her blog “My Son Has Autism”. And MOM-NOS recently gave a great description of what many of us go thru when deciding how much information to impart when our kids are going to someone else's house. And it seems that not a week goes by that I don’t see posts from people wondering how much information to relate to people in various other situations.

Well, for better or for worse, here’s how we approach it.

For our kids, it’s easy. Like adoption, talk about autism is natural. We don’t want our kids to feel that there is anything dirty or shameful about being autistic (or being adopted, for that matter). So our natural conversation contains many references to autism, school services, social skills class, etc. Our kids will be well versed in all aspects of IEP’s, FAPE, LRE, ESY, ABA, etc. In fact they will be so well versed they’ll probably be able to serve as advocates by the time they graduate grammar school. We talk about how all people have something that makes them different, and autism is one way of being different. We also point out how being autistic can give you certain advantages in life. This can sometimes lead to interesting playground exchanges:

“I’m autistic.”
“I’m artistic, too.”
“No, I’m AWWtistic. Not artistic. My brain is different.”
“Uh, OK. See you.”

While the kids still don’t understand that they don’t necessarily have to instantly share all aspects of themselves and their family life when meeting someone new on the playground, I’d rather have that then have them think that there is something “wrong” with them.

Now when it comes to talking to others about autism and how it affects your family, then I’d be inclined to recommend letting your gut guide you.

For acquaintances and schoolmates, it seems that it’s situational. Sometimes we just say that Buddy Boy has some difficulties with social situations. Sometimes we say that he has autism and sometimes this leads to him having problems with certain situations. Sometimes (like a big picnic in a park where we run into people we are acquainted with) we don’t say anything and just wait to see how things play out. My gut tells me that I’d rather have someone get to know Buddy Boy somewhat before telling them he has autism, rather than have to overcome any preconceived notions about autism they may have.

When it comes to work, I’ve never been one to go on and on about my home life with anyone within earshot. Many people are more social than me. You have to find what’s comfortable. I do have some close friends at work that I talk to, and to those people I talk about our family life, including the fact that our son has autism. I try to let them know the good stuff as well as the not so good stuff, so they don’t get a skewed view.

In public, if we’re causing a scene (which thankfully doesn’t happen all that often anymore) it’s sometimes necessary to do just as the good Dr. Chew does, and simply start out with “My son has autism, and …”. At other times a simple “Sorry, we’re just having a little difficulty today” does the trick. I think that personally I sometimes am hypersensitive to what I think others are perceiving. If you look at NT kids in public, a lot of them are exhibiting “behaviors” at any given time. So I’ve been trying to relax more and just go with the flow if we’re really not bothering anyone else. It’s really none of their business.

So that’s it. Honesty and forthrightness in the house, and using our gut instinct and common sense outside.

So what do you do?


Joe is 209 :( too much chocolate!

The 100 percent solution

Several years ago I went to visit Mr. B, the father of my best friend in high school. I had spent a good deal of time at my friend's house during high school, and had become somewhat close to the rest of the family. I always admired Mr. and Mrs. B's relationship. No matter what obstacles they faced, they always maintained a quiet calm about them. Although I did not have what could be described as a "bad" childhood, our household was always much more raucous and rough and tumble than the B's. I think one of the reasons I preferred hanging out at my friend's house over mine is that it always seemed more peaceful.

Mr. and Mrs. B and the family had had their share of tragedy in their life. One of their son's had fallen into a river as a child and died while three sons were fishing with their dad. Despite this (or could it have been because of this) having happened, there was always a sense of the joy of life in their house.

Mr. B was dying, and I wanted to go and visit, as well as give some respite for the day to his wife, who was caring for him.

I spent a good deal of time talking to Mr. B that day, and one of the things that I asked him was what was the secret of having a good marriage. Mr. B replied in his quiet, yet strong and direct, manner. "Most people talk about marriage being a partnership, and how things need to be 50:50. Then when they don't get what they perceive is their 50% worth, they get upset. I've always approached marriage as a 100% thing. Sometimes you're giving 100%, and sometimes you're the one getting the 100% from your partner. And sometimes it's some other percentage. And you can't keep track of when you're giving it, and when you're getting it."

Many years have passed since that day. I'm not the best husband in the world. I get cranky, can be self centered at times, and am not the greatest at cleaning around the house. Yet whenever there are stresses in my marriage (financial, dealing with the school system, feeling sorry for myself when I turned down a promotion to be able to spend more time at home, etc.) I try to stop and remember my conversation with Mr. B from that day, and try to give my 100% to my wife. And perhaps in doing so, I can pass some of that same joy of living that existed in the B's home to mine.

So on this Valentine's Day, give your love 100%, and open yourself up to the fact that that 100% will come back to you at some point.

Joe is 208

The Advantages of Being Odd

Liz brought home a book from the library the other day that I read to the kids. It was a book on Wilson "Snowflake" Bentley. She picked it up because it looked interesting. At any one time she actually has about 50 books on loan from the library. Both of our kids love having us read to them, and we have set an arbitrary lower limit of 30 minutes/day for each of them (which is often far exceeded).

So I'm a few pages into this book, and suddenly I get the realization, this guy was on the spectrum! The book mentions that he didn't like to play with other kids, never married, and was obsessed with the weather. Now I have no way of proving he was on the spectrum, of course, but certainly there are several other clues woven into the story.

First of all, Bentley dedicated his life to taking pictures of snowflakes. In his lifetime (during the late 1800's and early 1900's) he ended up taking pictures of 5000 different snowflakes! That's a lot of snowflakes. It took him two years of trial and error with a camera that he persuaded his parents to buy for him for Bentley to perfect the technique and capture the first snowflake (or more properly-snow crystal) on a photographic glass slide.

I've read a bit more on him on the web today. Bentley donated much of his collection to the Buffalo Museum of Science. In a biography on their web site the following can be found:

...To the villagers of Jericho, Vermont, Bentley was considered odd, and was known to many of them as the "Snowflake Man" because of his quiet nature and unusual preoccupation with his snow photography. But Bentley was a sensitive, thoughtful man; a gifted and intuitive scientist who was also a talented musician. He played the piano, organ, clarinet, coronet, violin, and composed music for a community marching band. Though it was never confirmed that he stood barefoot in the street playing his violin as snow fell from the gray sky, he would occasionally entertain villagers by imitating the sounds of animals and birds with his violin. Frequently, however, the people of Jericho would watch as he hurried past them, camera under his arm, notebook in hand, running to capture freshly falling snow. ...

Just think of what the world would have missed, if not for this "oddball". Not only is his collection beautiful, but Bentley also made great advances in photomicroscopy and contributed to scientific understanding of a natural phenomena. His birthday was yesterday, February 9th.

So here's to the "oddballs" of the world. The ones who see things that others around them don't, and have the intense interest to pursue passions that result in making all of our lives fuller. The world would be much worse off without them.

Joe is 208

166? 150? Who cares?

No sooner did I walk in the door last night than my wife tells me the news regarding the CDC releasing a new study saying that the incidence of autism in the US is now 1:150. There's an article in yesterday's Newsweek discussing this.

One of the main bones of contention between the curebies and the neurodiversity crowd is what exactly the incidence of autism is (or more accurately, if the number is increasing).

I think that both miss the point, to a certain extent.

The curebie crowd tries to use the numbers to show that there is an "epidemic" (can we ban that word from the English language for 20 years or so? Or at least restrict its use to epidemiologists?). Then extrapolate that if the number is increasing that there must be an environmental agent that must be exposed (usually mercury, but now expanding to other agents).

The neurodiversity movement counters that the number is not increasing, and increasing numbers are solely due to better diagnosis. To allow that there could be an increase in the numbers of autistics seems to admit defeat.

Who cares? Whether or not the number of autistics is increasing or not does not speak to what causes autism. All of the numbers to date are approximations. They may be becoming better approximations, but they're only approximations.

In a time when we should be uniting to advocate for autistics, instead we are wasting time in chasing numbers and divisive arguments that only serve to stall effective advocacy. I just wish we could agree on certain things, and agree to (politely) disagree on others. Unfortunately, the Web does not often lend itself to proper decorum.

I wish we could agree that:

Statistically, the 1:166 and 1:150 are not different, especially since different populations were surveyed to come up with these numbers.

Increases in the incidence of autism are certainly at least partially, and probably largely, due to better diagnosis.

Lots of things are increasing in incidence-Asthma, Hodgkin's Disease, Crohn's Disease, Total Psychiatric Disorders, Total Population, Population Density, etc. Just because any of these (or autism) increases, doesn't mean that there is an epidemic, or that a certain thing caused it (the eventual incidence of death for people born over the last 100 years remains unchanged at 100%, however).

We don't know what "causes" autism (other than genetic predisposition).

The most important thing for people with autism is dealing with it in the here and now, today. Research into "cures" may benefit future generations (after suitable ethical discussions are undertaken). But what should be uppermost right now are things that will help autistics to realize their full potential.

Things like education ("How do autistics learn best?", and "What compensations and "work arounds" are most compatible with their inherent way of thinking?"). Things like fully valuing social skills instruction/coaching in the education system as important to a complete education. Fully valuing autistics, such that they are not just given an "adequate" education, but are given an education that is individualized to their needs, and designed to maximize their potential (much like the general curriculum is designed to maximize the potential of NT kids).

Things like adult support services. The public sector's feet need to be held to the fire. We can't just shuffle kids along thru the school years, just to turn them out without any support as soon as they "age out" of the system. Proper supports can increase the level of independence of individuals, and are also liable to lead to better and higher paying jobs for these individuals (then they'll pay more taxes). What do autistics themselves think are the most valuable supports?

So let's just drop the numbers game for now, shall we? Instead, let's concentrate on what we CAN do now. And try to have a little bit of common sense and common courtesy in dealing with each other.

For my part, I'm keeping my moniker of Club 166, no matter what the "incidence" changes to. 166 is a much cooler number than 150, which sounds so plain.

Joe is 208 :)

The Wanderer

...Yeah I'm the type of guy that likes to roam around
I'm never in one place I roam from town to town...
-from The Wanderer, Dion, 1961

We used to have elopement issues with Buddy Boy. Anytime there was a chance to run, he took it. He'd escape from the house and run thru the neighborhood, which we ended up solving by using keyed dead bolts (which were against code, but hey, we weren't selling the house, and they served a greater good). He also used to escape from us in public whenever he had the chance. Whether we were at a park, museum, aquarium, Disney World, wherever. If he could get his hand out of one of ours for 2 seconds, he was gone.

Fortunately, over the last year this behavior has pretty much extinguished itself. Once in a while he'll leave us, but it's pretty much now because there's something really interesting that he wants to see, not running for the sheer joy of running and playing "chase me".

Unfortunately, over the last couple of months a new issue has come up. Buddy Boy used to sleep thru the night (but never past 6:00 am, no matter what time he was put to bed). Lately he's been getting up in the middle of the night, wandering thru the house, and then going back to sleep in another room. Usually this means the living room or family room. Sometimes he has come into our bedroom, but then we immediately take him back to his own bedroom, so he has stopped coming there. We asked him why he does this, and he said that he just couldn't sleep. He also said that the plastic mattress cover made too much noise. We got him a new padded mattress cover that seemed to help, but in a week he was back to wandering again.

As with many things, we used a two pronged positive + negative reinforcer strategy. We gave him gum (which he loves) if he woke up in his own bed, and took away things he liked (stuffed toys, building materials) if he didn't. While we've had some success with this, it doesn't seem to be decreasing the behavior any further (we're at about twice/week at this point).

We hadn't adjusted any of his meds in the recent past, so we didn't think it was a medication effect (unless he had "grown out" of his current dose and needed to increase it). So we tried giving him Melatonin at night, which helped get him to sleep, but then he would still get up later. We tried upping his Guanfacine dose, which only left him sleepy during the day. So we've taken to giving him a "top off" dose of Melatonin when we get him up at 10:00 pm or so to go to the bathroom, but even that has had limited success.

I don't really care about the wandering, per se, but about safety issues if he gets into something. Lately he's also taken to trying to disassemble things (like the clothes dryer) and engaging in one of his favorite activities, water play (which flooded the bathroom one early morning).

On the one hand I'm caught in the present, and looking for concrete ways to keep him safe at night (short of having him move into our bedroom, or one of us moving into his). On the other hand, I wonder and worry about what it means in a greater sense for his life. Is Buddy Boy destined to wander his whole life? Or will there be someone there to guide him if needed once we're gone, and supports in place to keep him safe and as independent as possible?

Only time will tell. Until then he'll wander, and we'll try to keep up, keep him safe, and teach him to keep himself safe.

Joe is 209 :)

Are you Pro-Choice?

No, not that pro-choice...

This article on a Dallas/Fort Worth TV station's website, talks about a proposal to offer school vouchers to parents of children with autism. The plan would give the parents the choice of either keeping their kids in the public school or placing them in a private school of their choice. The amount of the voucher would almost certainly not cover the amount charged by the private school. But it might make the difference for some families in being able to attend such schools.

As it stands in my locale, we have the choice of sending our son to a public school, or paying ourselves (about $30,000/yr or more) for private school. Some students are sent to the private schools by the public school system, with total payment made by the public school system. This only happens when it is proven that the public school cannot provide an appropriate education (which means that the public school never initiates placement in a private school, and usually a protracted and expensive legal fight is necessary in order to get the public school to ante up the money).

Sometimes parents preemptively pull their kids out of the public school and place them in the private school while they are also undergoing the legal wrangling necessary in order to get the public school to pay. This is not an option for most, however, as the double costs of the private school as well as the legal fight rapidly become staggering to all but the most well heeled.

I think that, in general (there are some exceptions), the public schools are terribly failing to educate children on the autism spectrum. There is no will, and no money, in the public school system to institute the kinds of therapies and supports that our kids need.

I don't think that a voucher program is a cure all. But if they took the money that they budgeted for special ed kids (say, 1.5X the average amount budgeted for the general education students) and let the parents apply that money somewhere else, it might make a meaningful difference to many families.

Joe is 210

Weighty Issues

Sell the house and move to another school district?

Quit my job and move across the country?

Start some new therapy?

No.

It's all about me, today. I need to lose some weight. I am 5'10" tall (177.8 cm), and weigh 210 lbs. (95 kg), as of this morning. I've been as high as 213 recently, but haven't been able to consistently take off any weight. I'm not sure, but it may have something to do with the candy dish at work that's filled with M&M's (and sometimes other really good chocolate).

In high school I weighed between 180 and 185 when I was on the cross country team. I actually feel and look pretty good at 190 (especially since I've put on some muscle with weight training). Right now, I'd be happy to be down to 195, which I haven't seen in a while.

I'm setting a goal to get down to 195 lbs. So now the question is, how do I go about doing it?

Atkins, South Beach, Weight Watchers, personal trainer, what? From these main stream choices, I could quickly devolve into such things as diet pills, the juice fast diet, and magnet therapy. Indeed, a Google search for "quick weight loss" returned 3,400,000 hits in .08 seconds. I love the internet. It appears that weight loss may be the only area that surpasses autism in numbers of quack treatments (I had to put something about autism in here today).

Well, after scrolling thru a few pages of these selections, I've decided to make up my own diet. I'm going to call it the Ph.D diet.

The WHAT?

It stands for the "Public Humiliation Diet".

In addition to any other posts I make in this blog, somewhere in the blog (I think I'll put it at the bottom) I'll post my weight for that day.

Of course, I could just go and get myself magnets and some diet pills, but I think we'll try this first.

Joe is 210

Little Hurts

There are a lot of big issues that we have to deal with (which doctors to use, which therapies, which drugs in what doses, what school to go to, etc.). And there are things which hurt us (inappropriate placements, ignorant people in public, inappropriate treatment and comments from school staff, etc.).

There are also a lot of good things in our life right now (my ability to move to a different job position with a little more predictable hours, positive interactions between Buddy Boy and his sister (as well as "normal" competition and arguing between them).

But some of the things that hurt the most are the seemingly little things.

This year Buddy Boy is in a different school than he was last year. He started out last year "mainstreamed" in Kindergarten without an aide assigned to him. This was disastrous (as we predicted during his IEP). Instead of adding support in the classroom, he was pulled out and spent half the year in the "resource room" being "taught" by 7-8 different "teachers" a day. They were never consistent, treated him as if his non-compliance was willfull on his part, and responded with suspensions. This year he started off half time in a school for emotionally disturbed kids, and half time in a "Communications Classroom" at a different school than he attended last year (this was the best deal that we and our lawyer could get, considering the malicious paper trail they had layed). Part of our bargain was for him to have an independent evaluation, which was done in November. Since the holiday break he's been full time in the Communications Classroom, but still without any mainstream inclusion.

There is one other child in Buddy Boy's class that is also there full time. The remainder of the kids in the class are mainstreamed with support for varying parts of the day. The only things that Buddy Boy does do with other kids are recess, lunch, and all school assemblies (if he's able to tolerate the noise).

Right before the holiday break the school had what they termed a "Peace Assembly". They wanted to have a celebration before the holidays, but didn't want to offend anyone, hence the term. This assembly was run by the parents association of the school. For this assembly the kids practiced singing specific songs in Music class that would be sung at the assembly, and every kid in the school painted a rock for the assembly. All the rocks were brought by the kids to the assembly, and they made a big thing about these rocks. They are going to make a patio behind the school with these rocks embedded in it. A big theme of this assembly was including everyone and everyone getting along together. Parents were invited to the assembly to share in this experience. Everyone in the school participated in the assembly.

Everyone except for two kids in the Communication Classroom. Neither of whom went out to Music class to practice singing the songs, and neither of whom went out to Art to paint rocks.

We might not have found out about it, except that Liz did indeed attend the assembly, and was totally mortified that Buddy Boy wasn't included in this. How welcome do you feel at a new school when everyone at the school does something, and you and only one other kid are excluded? How hard would it have been for the parents association and the teachers to assure that ALL kids in the school were included?

I know that it was an innocent oversite, born of ignorance. No one meant any harm. And after a flurry of e-mails, they have promised to do better next time (though they don't seem to think it was a big thing).

But this one hurts. Bad. I'm sure that my son felt even more excluded and left out then he is usually made to feel by the system. And there was absolutely no reason for that to happen. What a great thing it would have been if someone had thought a little, and for once he was truly part of the group. What a lost opportunity.

Lacks Creativity

Buddy Boy is presently full time in a Communications Classroom. He shares this classroom with a few other students, who all get at least some inclusion in regular classrooms. It's only been about 6 weeks since he was spending half of his time in this class and half of his time in a school for emotionally disturbed children (he is autistic, and NOT emotionally disturbed).

Well he just brought home his first report card for this year. Three things stuck out. First, half of the report card was missing. There was no reporting for half of the subjects. Second, he got marks for a class he didn't attend (Music). And finally, in Art he was marked as "lacking creativity".

Well that one just chapped my backside.

My son may not be as compliant as they would like. He may butt in to tell the teacher what he knows about a subject. And he may spend recess outside walking the fence looking for worms or spider eggs. But one thing he's got in spades is creativity.


This is something that Buddy Boy was building this afternoon, and is typical of some of the stuff he builds, although he often builds stuff that is much more complex, with levers that he fashions that interact with and move other things in his creations. I asked him what this was. His response? "It's the entrance to my hideout".



"Once you get past the towers, you get to the gate".






"Then, when you push the code in-don't tell anyone the secret code, Dad..." (demonstrates tapping a series of blocks in a specific order while making a beeping sound)






"...the gate slides this way and you can get in to the hideout".












Perhaps this isn't their cookie cutter idea of creativity. But I'll take Buddy Boy's creativity over their's, any day of the week.

A Sunny Day

Although it's a bit cold in the middle of the US right now, the last few days have been sunny.

If left to his own devices, Buddy Boy would spend the majority of his time in his room building things. He just loves to build. Towers, water treatment plants, houses for animals to live in, garbage dumps. He builds with blocks, magnet sets, K'nex, and Tinkertoys. He is most prolific (and creative) when using paper and tape. He's made space suits and sea scapes from just white paper and tape.

We love that he loves to build, and we encourage it (as well as play with him and encourage him to play with his younger sister, Sweet Pea). Bu we also like to get him out doing more active things, for physical exercise and coordination (which he has some issues with), as well as for the whole socialization aspect of it (working with a group, taking directions, interacting with peers). As his school thus far has not seen fit to provide him with any inclusion, we think it's even more important that we provide some.

Buddy Boy has historically not been really happy partaking in group activities, or even individual sports type activities. Oh, he'll go on a bike ride with me with some cajoling, and sometimes even willingly, but it's far from a preferred activity. Swimming lessons and gymnastics are even tougher. Presently he's only in a Saturday morning swim class, and no gymnastics at the moment (due to no current class fitting his schedule). Once we get him going with these activities, he's usually OK (partaking for significant portions of the class, only occasionally having to sit out portions of the class in order to regroup). But the first time he goes to one of these activities is usually frought with moderate to major resistance on Buddy Boy's part. Reaction on his part usually involves such comments as "What were you thinking? How could you do something like this to me? You're so mean to me". Of course, once the class is over he's usually OK with having gone to it. And sometimes even admits it was fun.

Experience has taught us that the best way to introduce an activity like this is not to start talking about it days ahead of time, but instead to just introduce the idea 30-45 minutes ahead of time. So Liz signed up Buddy Boy for a class at a local "kiddie gym". This place is run by an OT who runs several classes throughout the week. Many kids on the spectrum take these classes, but there are also several NT kids in her classes.

Well, Liz picked up Buddy Boy from school yesterday, and gave firm instructions to Sweet Pea beforehand not to announce it to Buddy Boy (as she would have almost certainly said something in a sing song voice like "You're going to the kiddie gym, and you're not going to like it"). So Liz announces to Buddy Boy, "I've got a surprise for you! You're going to the kiddie gym today for a class!". And Buddy Boy said...

"OK".

And he went, didn't have big problems with separation, and participated in the majority of the class without a problem.

Sometimes the littlest of things can make your day sunny.

Why I hate "The Supernanny"

I've really got nothing personal against Jo Frost, the person who plays "Supernanny" on the ABC show of the same name here in the US (UK readers can find her here). But after watching a few episodes of the show, I've got to say that I just can't stomach it anymore.

Yes, I know, it's only a TV show and entertainment and all. Don't take it so seriously, Joe. But it just seems to me that "Supernanny" represents a lot of things that just aren't true, at least not in my world.

According to the "Supernanny" website:

...Jo Frost, as Supernanny, can tame the wildest toddler, soothe the savage six-year-old and get the most difficult child to overcome problems with behavior, sleep, mealtime, potty training and other challenges that have vexed parents around the world for centuries. ...

Well isn't that just great. And she gets it done every week in 60 minutes (42 minutes not counting commercials)!

The world of "Supernanny" does not allow for kids on the autism spectrum. And the way I read the world of the "Supernanny":
-All kids behavior disorders are due to their parents bad parenting (do I hear echoes of the "refrigerator mother" hypothesis here?).
-All of these behaviors are simple to correct.
-If you've tried correcting your kids behaviors and haven't been successful, then you're either a) not trying hard enough, or b) still a bad parent.

As a family we're fairly successful in helping Buddy Boy self regulate his behaviors. He's made great gains over the last couple of years. It's slow, but when I look back at how he interacted with people two years ago and how he does now, he's really come a long way. In fact, the only place where their still seem to be major behavioral issues is at school. Not at home, not at gymnastics, not at swimming, not at church services. Hmmmm.

Yet, when we talk to the "experts" at school, they blather on about perhaps we should be trying positive feedback, negative consequences, time outs, star charts, etc., etc. I can't help but think that they've been conditioned by the "Supernanny" to believe that my son has a behavioral or emotional disorder, and not a sensory processing disorder, and inherent emotional regulation problems directly related to his autism and ADHD. And, of course, that we are just Bad Parents.

And then of course there's the fact that he ONLY "misbehaves" at school. When I bring this up to them, they just can't process that, and never directly respond. I'm sure they don't believe me.

Does "Supernanny" make shows about dysfunctional autism experts at schools that need to be reigned in? If she would do that, I might just tune in again.

No (NT) Child Left Behind

So the other night I attended a parent's association meeting at Buddy Boy's school. The majority of the meeting was taken up by the teachers explaining April's upcoming statewide test, which is mandated by the No Child Left Behind (NCLB) act.

Now Buddy Boy is in the first grade, and these tests don't start in our state until the third grade, but it was interesting to sit there and listen nonetheless.

Two thoughts came to mind as I pondered what was being said. First, it was obvious to me that the test was going to be very challenging for a lot of kids on the spectrum (especially mine). The test is written, long, contains a lot of 3 step instructions, and there is no assistance or directions allowed from the teachers once the test has begun.

I can just imagine Buddy Boy, who has a lot of ADHD type symptoms, sitting and filling out part of the first page. Before he even gets to the second page I can easily imagine him getting distracted by something (how the paper smells, what kind of design the cover has, etc., and zoning out for the next couple of hours until they tell him to turn in his book. Without someone prompting him to answer the next question, I just don't think the test will reflect what he knows. Also, while Buddy Boy can write, his writing tends to be slower than his peers and takes a lot of his energy. Again, sub-par writing skills may lead to significantly under representing how much knowledge he really has.

Now, Wrightslaw,which I usually respect and pay attention to, seems to feel that NCLB will make schools stand up and take kids with disabilities seriously. Also, this site seems to agree with that sentiment. But it seems to me that unless a LOT of accommodations are made for special ed kids (and I can't see them doing that when they're testing large groups of kids at once, then a lot of our kids are not going to test well at all on these tests, and may be left further behind than otherwise.

There's another potential problem that I see with how all this is done. The school very obviously "teaches to the test", and devotes the vast majority of their manpower from after the winter break until the test to drilling kids for the test throughout the school. What this meant this past year, when Buddy Boy was in Kindergarten, was that the bare minimum of people were in his class for several months last year, as any available aids were pulled to help tutor/drill the classes that were going to be tested. You see, our school district actively opposes "paras" for individual kids, and instead uses what I refer to as a "zone defense", where they will have one or two aides per 5-7 kids. Since the aides are not assigned to a particular child, the school is free to assign them "temporarily" where they are most needed (such as drilling kids in grades 3 thru 5 for the upcoming test).

I imagine that any available personnel from the first and second grades were pulled, too, as neither of those grades were being tested. So for up to 4 months of the school year, the Kindergarten, first, and second grades are short shrifted teachers and aides. While NT kids may do all right with this, I feel certain that this led directly to increased meltdowns in class last year for Buddy Boy, because there were less people around to redirect him when he was in the early stages of having a problem in the classroom. This then resulted in less time learning for him, and him falling progressively farther behind. If it weren't for all the time my wife spends tutoring him outside of class he would be far behind academically.

So the bottom line is that my mind is not at all made up about this. I think that NCLB is a good idea in theory, and could indeed result in more attention paid to kids with disabilities. But the devil is in the details, and I'm somewhat anxious as to how this is all going to pan out.