Rolling onward

Spring came to the middle of the US in full force this weekend. It was such a beautiful day that we had to go out to the park. It seemed our whole town was out there today.

We took the bikes with us for the first official ride of the season. Our park has a paved path that loops around the outside of the park. When I announced we were going to the park to ride bikes, Buddy Boy initially didn't want to go. Inertia is always a force to be overcome, and he was involved in watching some cartoon he had just turned on. But I just told him we were going in 5 minutes, and he didn't put up any resistance when it was time to go (probably mostly because he really does like to ride his bike).

I'm really glad that Buddy Boy has gotten the hang of riding a bike. I'm a somewhat dedicated amateur rider (not nearly as dedicated as I used to be), and riding serves as moving meditation to me. The rhythm of the wheels and the pedals, the wind in my face, and the motion all combine to make a sensory experience that soothes my soul. It's been something that I wanted to share with Buddy Boy, and it's a good feeling knowing that he likes it, too. Last year when he finally got the knack of riding without the training wheels he was so proud of himself he just glowed. He knew he had accomplished something hard. And it made me feel so good to see him so proud of himself.

While loading the bikes in the car, Buddy Boy tells me he wants to take his safety gear (elbow and knee pads). By the end of last season (his first season riding without training wheels) he was declining to wear the gear, having built up confidence in his riding ability. I sense a bit of anxiety on his part that he'll still be able to ride.

Liz is also a bit anxious about his riding ability. She remembers how long it took us to lose the training wheels, and knows that it was only towards the end of the season last year that he was really getting it. "Perhaps you should take him to an open parking lot first to practice?" I declined, knowing (hoping?) in my heart that riding his bike would be to Buddy Boy like, well, riding a bike (something never forgotten once learned).

It went just fine. One push to get him going up the first little hill, and he was off, followed close behind by Sweet Pea, who is always trying to keep up/beat her brother who is 2 years older than she. Buddy Boy quickly regained his confidence, even becoming a bit overconfident and running off the path almost into a bush. He was a little upset, but quickly recovered. He's done a lot better over the last year in terms of being able to regain his equilibrium.

After two times around the park the kids wanted to go play on the playground equipment. I got pushed into duty for one of their favorite games, where daddy plays the troll, and they try to escape (basically a game of "chase me"). I also spot another kid who is probably on the spectrum, there with his dad. I debate whether to approach to make conversation. I look in their direction, wondering if he's noticed us. He hasn't, and he moves on.

An hour later and its off to home again. It's great that Spring is coming, and it's great to be rolling along again.

Joe is 210

The Sniff Test

Recently I had a chance to meet Roy Richard Grinker, author of "Unstrange Minds-Remapping the World of Autism" at a book store. He's been on a midwest and mid-southern tour of cities. There was only a small audience, so I got to talk to Mr. Grinker a bit.

I had had a hard day at work, rushed home to get in some play time with the kids, then went back to the book signing. After the book signing I went home and had a beer while I caught up on some e-mail. As per our usual routine, I got Buddy Boy up to go to the bathroom a little after 10:00 pm (if we do this he usually stays dry thru the night). As I bent down to tuck him in afterwards, Buddy Boy says "Don't drink beer, Dad. It makes your breath smell bad."

I've been thinking about smell lately and how important it is to Buddy Boy, as well as a lot of other autistics. Smell is probably the most ignored of all our senses. Most of us don't pay much attention to it when we have it, but miss it terribly when it's gone. It helps us make scents of the world. Smells can warn us of danger, help us taste our food, increase our level of sexual arousal, and trigger memories of other times and places. The first time I entered an operating room (other than as a patient) I caught a scent of something (cleaning agent, the smell of instruments coming out of the sterilizer, trace levels of anesthetic gasses?) that triggered a flashback to when I had my tonsils out as a 5 year old. It was a vivid memory.

Buddy Boy has always had a keen sense of smell, and unlike most NT people, actively engages his sense of olfaction as he interacts with the world. He smells the pages of books, food choices are heavily influenced by their odor, and he smells people when he meets them. He has learned that it's not considered polite to tell people that they smell bad, but doesn't think this rule applies to family members (which is OK with me, as long as he's not going around telling everyone else in the world they smell bad). I'm hoping that maybe his increased sense of smell might help him in the workplace some day.

So anyway, back to the book signing (you knew I wouldn't just let that go).

I haven't had a chance to read Mr. Grinker's book yet, so my comments are just about meeting him as a person and having a short conversation with him. Roy Richard is a very engaging man. He's the type of person I would love to have at a party, or to sit down over a pot of coffee or tea with. He speaks Korean and Swahili, and has traveled around the world doing epidemiological research on autism. But he's also a down to earth kind of guy. Someone very much like the rest of us, just trying to do the best for our families every day. He said that he sometimes still gets nervous going into IEP meetings, wondering whether the team will focus too much on the negative aspects of his daughter's performance rather than the positive ones.

Grinker definitely falls on the "acceptance" rather than "cure" side, and in response to an audience question recommended the blogs of Autism Diva (he likes her attitude and opinions), Kevin Leitch's Left Brain/Right Brain (a very well thought out and knowledgeable site), and Kristina Chew's AutismVox (where 10 minutes after any news relating to autism is released, it's up on her blog).

I don't pay nearly as much attention to my sense of smell as Buddy Boy, but Roy Richard Grinker passed my sniff test when I met him. I look forward to reading his book.

Joe forgot to weigh himself today (purposely?)

Always have a Plan B

One thing I've learned (and teach) when it comes to crisis management is to "Always have a plan B". Like a chess player, you always have to be thinking ahead about possible future states, your possible reactions to them, and the possible consequences of those reactions.

So although our present plan is to stay the course and try to work with our local public school educators to school Buddy Boy, we realize that that is subject to change at any time.

We've looked at private schools in our neck of the woods, and at least for now, none are appropriate for Buddy Boy, or the ones we feel are, aren't willing to take him on at present.

So rather than just hope for the best, we also have a "Plan B", which for now is home schooling.

Last year we exercised this option when things were spinning out of control for us. Rather than let Buddy Boy get wharehoused in a totally inappropriate setting, we withdrew him for a medical leave, and homeschooled him for Kindergarten.

I think we're fortunate that we live in the US in this regard. It seems that homeschooling is much more accepted here than it is in other places. This is one trend that Europe doesn't seem to "get" as much.

Tibetan Star's post for March 2, 2007 linked an article from Germany where a teenager was imprisoned in a psychiatric ward for being homeschooled. Also reported that day was a proposal from the UK to have a central computerized registry of all of those utilizing this form of education.

Here in the US, laws vary from state to state, but most are fairly lenient. Most states set some requirements in terms of curriculum and record keeping, but are fairly lenient when it comes to the credentials (or lack thereof) of parents. According to Wikipedia, in 2003 there were 1.1 million children being homeschooled in the US, or 2.2% of the school age population. There is even a legal defense organization to support those who choose to homeschool.

Sometimes, states even actively support parents in their efforts. Though most states don't directly financially support homeschools, this article details how one state, Missouri, is proposing to give support for supplies and books to homeschools.

Probably the biggest allure of homeschooling is the freedom from the predominant educational culture, which values conformity above creativity and individual expression.

For now, we've decided to stay the course where we are. Liz isn't wild about persuing the homeschool option (though she does a LOT of education with the kids as it is at the present time). I think she's mostly concerned with the record keeping requirements. But I'm sure we could handle this route if we have to. And it's always good to know you have a "Plan B".

Joe is 210

Bad News/Good News

What I've really been thinking about are the weighty issues raised on Kristina Chew's website, as well as elsewhere. But I'm just not up to tackling those things today. So we'll keep it a bit closer to home.

I haven't totally figured out how Buddy Boy is "graded" every day. Every day we get feedback from the school as to how he has done during each period of the day. He gets either a green light, yellow light, or red light. Besides getting a "light" for each period, there will also usually be explanations of his behavior for either yellow or red lights.

Last week Buddy Boy started "inclusion" for one or two periods each day in his assigned first grade classroom (he hasn't been there all year-instead he has been in a self contained sp. ed class). The first few days went well (novelty usually works to keep him distracted/interested) but the yesterday he got yellow lights, and today he got two red lights.

There never seems to be a consistent standard for what constitutes a red light vs. a yellow light vs. a green light. We have asked them in the past to clarify this, but have never really gotten a satisfactory answer.

Today's red lights were for two things. The first one was evidently when he was sent to the nurses office to take his midday meds. Instead of proceeding directly to the office, he decided to go and visit teachers in other rooms. While I realize that it's important to follow directions in school, marking an autistic kid down for socializing seems rather ironic to me (although it is consistent with the school district's unpublished motto "Obsequium Supra Omnia"-Subserviance above all else[Thanks to Dr. Chew's correction of my grammar]).

The second red light was for refusing to participate in a group activity. No notations were made that any screaming or physical actions on Buddy Boy's place took part.

So basically, I'm a little bummed that things aren't totally hunky dory with the inclusion thing this week. But in my view, it's great that he's not doing anything that can get him suspended/expelled. He's keeping it together enough to tell him what he doesn't like without getting physical with them. As long as that keeps up, we can work on the rest.

Next week, we have parent-teacher meetings, so perhaps we'll get a better idea of what exactly the different colors mean.

As negative as this post might sound, we actually are making progress with the school, and I think Buddy Boy is, too. And as long as we're moving in the right direction and not losing ground, I'm willing to work with it.

Joe is 210

Dirty Laundry

I almost titled this post "The Good, The Bad, and the Ugly". I figured I'd link to Thursday's post for the "good", Friday's for the "bad", and today's would elucidate the "ugly". But then I thought that might be too tacky.

What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.

A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.

Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.

When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.

Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).

So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.

Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].

I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.

Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.

Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.

Joe is 210 :( :(

What a difference a day makes

What a difference a day makes.

It was only yesterday that I was flying high, rejoicing in the good news regarding an autistic young adult being accepted and honored in our department.

This morning, right before going to work, I log on and peruse a couple of blogs, and what do I see but this story, quoted by MommyGuilt .

...On Monday, February 26, a 6-year-old autistic boy was read his rights and charged with Assault II for jumping on his special education teacher. This arrest was made when he and his mother went to pick up some files at the Kailua-Kona, Hawaii Police Department ...

I think that the reason that this case struck me so hard was that many of the facts of this case seemed to parallel what had happened to our son a year and a half ago.

...Prior to jumping on his teacher, he was removed from his current classroom because the staff was worried he would hurt himself or others, and kept him in time- out from 10:55 a.m. until his mother picked him up at 2:00 p.m. ...

When Buddy Boy was in Kindergarten (last school year, as a 5 year old) he, like many kids on the autism spectrum, had issues with self control. Some of it was reacting to things in the environment, some of it may have been from delayed maturation, and I believe the majority of it probably stemmed from the system expecting a 5 year old with autism to be compliant at all times. All of their “interventions” were directed at getting him to be compliant. They didn’t care whether he learned anything at all. Indeed, any subject matter they presented was way below the types of worksheets that his mom, Liz, had him doing at home. And when they did do things in class, they insisted on repetition to the nth degree. This, of course, resulted in boredom and frustration on Buddy Boy’s part. Despite having all these things pointed out to them, his “teachers” persisted.

Due mostly to an idiotic curriculum not suited to him, and probably partially to lack of self control (in the face of being taught by idiots) Buddy Boy trashed the classroom one day. He first threatened to trash the classroom (“I’m going to throw things”) to which they responded with their direction of “Sit down, Buddy Boy” three times, dutifully recorded on their chart that he had refused to sit down, then stood back when he started pulling things off the shelf. No one acknowledged that he was angry and/or frustrated. No one tried to find out why he was upset. Just a command to sit down repeated three times. Mom was called to come and get him and take him home.

Buddy Boy was suspended for three days for that, and moved to a “resource room” where he was the only student. We were warned at that time that if he continued to be violent and a threat to others and himself that the police would be involved. Despite our convening another IEP (which they kept delaying) and attempting to get a much better behavioral intervention plan in place, the staff continued to do things to set him off (deliberately, I suspect, but have no way of knowing other than their e-mails obtained later which intimated that they had a plan for a solution in place, while during this time they were telling us that everything was fine). They had him “taught” by as many as 7-8 different “teachers” per day, on no consistent schedule. They would print up a schedule and show him on the clock when he would have a break, then another teacher would come in and cut the break short. Still, all they were teaching was compliance with rules, and repetition of busywork. He lashed out a couple of times at them (slapping and kicking), and each time he got “written up” without suspension. The disciplinary write ups had these check off boxes on the form for reasons they thought the behavior occurred. Almost all of the boxes had to do with the student (acting out, seeking attention, secondary gain, etc.). There maybe was one for the environment, and none at all for “provoked by idiot staff”, which was what I would have checked off.

Buddy Boy acted out again (in this stellar teaching environment) and threw a stapler across the room. This earned him another 4 days suspension. At this point he was one suspension away from a mandatory placement in another setting. We had already surmised that they were trying to build a case against Buddy Boy as an out of control kid that was a menace to himself and others, and had to be removed. The placement that they had in mind was in a separate school in a class of emotionally disturbed kids.

Meanwhile, just so one can understand how Buddy Boy was doing in general, this is what was happening outside of school. He had a weekly gymnastics class (that he grudgingly went to, didn’t look forward to) where he functioned within a group setting with individual assistance by a high school student with no special ed training. He also attended swimming class every Saturday morning (another non-preferred activity-he likes free swimming, but not swimming class). He also functioned just fine in this class being taught by high school kids for the most part. He attended church services without acting up, and though he argued with us a lot at home, we had gotten to the point where he was not aggressive with us.

...The school has been asked repeatedly to at the very least provide a one-on-one aide that is trained in the art of dealing with autistic children, or move him to a school for autistic children. ...

In our case we had asked several times (since before he was even admitted to Kindergarten) for a 1:1 aide. Each time we were refused.

By this time we had progressed from just having an advocate with us to having a lawyer involved. We short circuited their attempt to have him expelled by withdrawing him for a medical leave, and Liz home schooled him for six months (to complete the school year). He had someone from the school provide some instruction in the home, but again they were somewhat clueless (instruction below level, repetition, repetition, show me you are compliant).

Meanwhile we continued to convene an IEP for the following year (this year) with multiple meetings with staff and lawyers. I think one of their strategies was to try and bankrupt us by having more and more meetings. I think they also thought that if they had enough meetings then only my wife would show up, and not me. They thought wrong.

Our compromise that we agreed to was half time in their emotionally disturbed classroom (though we had it in writing that they did not have permission to use their preferred methods of discipline-physically removing kids into a padded room or a wooden box). The other half time was to be spent in a special ed class located in a regular school (NOT the school he was in before). For agreeing to this we got them to agree to an outside evaluation of Buddy Boy’s behavior. We had to wait a few months into the school year to get the evaluation, but the outside group said Buddy Boy was doing fine, and indeed should be in the least restrictive environment, and that there was no reason to bus him back and forth between two schools every day.

So now Buddy Boy is in the special ed classroom in the regular school, and just this week he had his first inclusion in a “regular” class for art, which went just fine.

I thought I was getting past my anger at how my son was railroaded last year, and of how idiotic many of the “experts” at his previous school acted. And how malignant they were in plotting behind the scenes to get him thrown out, even if it meant having a police record. My reaction to this article today tells me I have a ways to go.

The mother in Hawaii further relates:
Many people have told me that I need take this to the media to finally get the help we need, and that is what I hope to do. I have done everything the school has asked and tried to work with them, to no avail. Now, here I am with a disabled 6-year-old with Assault II charges against him.

Getting the media involved might just work. It is my impression that Americans in general have become much more hardnosed and unforgiving of the acts of adolescents, and this has also led to prosecutors trying to prosecute younger children (some as young as 10 years old) as adults in violent crimes. But I still think that 6 year olds get somewhat of a pass in society, and media attention might help. Of course, being disabled lowers the age of what is considered acceptable to prosecute, as does being poor or a member of a minority.

Finally, the mom writes:
We are filing for a Fair Hearing. But I understand this will take months and my child is not being educated nor is the school providing any help with his education, even though they know neither he nor I are able to go on school grounds because of the temporary restraining order."

Finally, something they definitely can’t do. As I hope the mother is aware, she needs a lawyer. Maybe two. Definitely one for the educational case, and possibly a second one for the criminal case. If she's lucky the special ed/disability rights lawyer can do both for her.

IDEA 2004 spells out specifically how they can kick your kid out of school (suspensions, expulsions), and how they can place him in an alternative setting. It also spells out what they have to do in terms of providing education. They end up not having to do much, but they have to do something.

The mother needs to inform herself what IDEA 2004 actually says, and the first place to start is at the Wrightslaw website. If you scroll down the left hand side there is a section called "Law Library". In there you can see a button to click on for IDEA 2004. If click thru to the IDEA 2004 Statute and Regulation page, there is a link to download the whole law with commentary from the Federal Register.

Basically the law says that the school can suspend a child for up to 10 days without providing any instruction. After that the IEP must meet to decide what is appropriate to be provided (this, of course, is the same IEP team that got you into this mess to begin with). The school also must provide a functional behavioral assessment and behavioral intervention services and modifications, that are designed to address the behavioral violation so that it does not recur.

Once a change in placement is determined (and they can't kick you out without a change in placement), within 10 school days an IEP team meeting must take place to determine whether the behavior was a result of the child's disability or not (of course, I've never heard of a school in this situation admit that the behavior was a result of the disability, or a failure to follow the IEP).

Finally, they can remove a child to an "interim alternative educational setting" for not more than 45 days, even if the violation was secondary to the child's disability if one of the following special circumstances occurs: 1) carries or possesses a weapon at school, 2) uses or possesses illegal drugs at school, or 3) has inflicted serious bodily injury to another person while at school or a school function. Of note, "serious bodily injury" is defined in the US Code as follows:

Title 18 USC Sec. 1365
(3) the term "serious bodily injury" means bodily injury which
involves -
(A) a substantial risk of death;
(B) extreme physical pain;
(C) protracted and obvious disfigurement; or
(D) protracted loss or impairment of the function of a bodily
member, organ, or mental faculty; and

(4) the term "bodily injury" means -
(A) a cut, abrasion, bruise, burn, or disfigurement;
(B) physical pain;
(C) illness;
(D) impairment of the function of a bodily member, organ, or
mental faculty; or

(E) any other injury to the body, no matter how temporary.


My guess (and I am NOT a lawyer, and none of this is to be construed as legal advice)is that they would have a hard time proving "serious bodily injury". But unfortunately, this person needs a lawyer badly, to try and stop the steamroller that this school district has set in motion.

I really wanted to bask in the good feeling I had yesterday for a while. I'm a realist, and I know that not everyday is good. And part of me wishes I didn't see that blog posting this morning.

But part of me knows that being vigilant, and keeping our legal ducks in a row is an important part of advocating for Buddy Boy. Because one of my worst fears is that something like this will happen to us.

Joe is 209

Small Victories

I've written before about "Little Hurts". Well today I get to report on the other side of the coin, the small victories.

I work in a department of about 100 people. Our offices are in several different buildings spread over 4 or 5 city blocks. About two years ago or so, our department was approached by a local agency that helps support disabled people in finding (and keeping) jobs. Up until this time each individual section tasked someone to interface with the campus mail system. When this agency approached our office manager to inquire whether we could use anyone, she decided that she could free up secretarial time (which we needed to do) and create an internal mail distribution person for our department.

Susan (our office manager) doesn't have kids of her own. She is a perfect employee, always knowing exactly how to get things done, never complaining, and being very efficient in getting the best out of others. Some of the secretaries think she expects too much, but I've always thought she did a great job.

Susan hired Michael thru this agency. He is paid a normal salary for this position. And he is quite obviously autistic. His gait is a little off, he rarely makes eye contact, and he doesn't say much. Michael is about 18-20 years old, and lives with his parents. The agency supported Michael by sending a "coach" with him for the first few weeks who worked very closely with Susan and Michael to get him trained. Now the coach comes periodically to check on him, and more often if there are particular problems that we need him to help us with.

I've seen Susan reading things about autism on the web, so as to try and understand how best to work with Michael. She has been as instrumental in Michael being successful in his position as the agency that placed him.

Now for the really good part...

I was walking thru the department today, and I look up at the wall where there is a framed certificate on the wall announcing the "Employee of the Quarter".

MICHAEL IS THE EMPLOYEE OF THE QUARTER!!!!

I was so happy I almost cried. The employee of the quarter doesn't get much. You get the certificate, bragging rights, and I think you get a small token gift. The award is voted on by all the members of the department every quarter.

So it isn't that it's such a big thing. But to me it's HUGE. A young adult autistic who just as easily could have been cast aside is not just "tolerated" by the people in our department. He has been accepted. And supported. And I just had to share that.

Joe is 209