Wednesday, May 30, 2007

Death by Suffocation

photo credit-Steve Brandon

Kristina Chew referred on her blog to an article today about an autistic individual who died while being subdued by police. According to the article:

...Mitchell died in a hospital last July following a struggle with deputies at his Perris home. Deputies responded to the residence after his mother called 911 saying she needed authorities to pick up her son. ...

The article was prompted by the mother filing a wrongful death lawsuit against the police. As might be expected, there are two different versions of what caused the incident:

...Sheriff's officials contend Mitchell died from autism-induced "excited delirium syndrome," a condition that leads to sudden cardiac arrest. ...

..."That's what they always say," attorney Carl Douglas said.

Douglas believes Mitchell died of positional asphyxiation after several officers piled on top of him. ...

Before I go any further, let me state for the record that I am generally supportive of law enforcement. I have expressed concerns about their level of training and how police interact with autistics, but I have also given praise when I felt they deserved it. They have a tough job, and have to make some tough decisions in rapid succession. They also aren't always trained as well as they should be to deal with "special case" situations, such as dealing with autistics.

After seeing the post on Kristina's blog today and reading the article, I just had to make some comments.

As a physician, I had never heard the term "Excited Delirium Syndrome" until I heard it bandied about as a defense when subjects had died in police/emergency workers custody shortly after being forcibly subdued by them. And I had never heard autism ever mentioned as something that might induce such a "syndrome". Personally, I don't think it exists as a separate syndrome.

Excited delirium syndrome has been used when a person dies in custody after being forcibly subdued. Typically the person that died was also under the influence of illegal drugs such as PCP, cocaine, and methamphetamine. All of these drugs can put a stress on your heart before, during, and after a forcible struggle with the police. While I do understand that sometimes force is required to subdue violent individuals, I believe that there is inadequate recognition of the possible negative outcomes that can result from forcibly subduing someone, which results to force being reverted to too often, and more importantly, improper after care once force has been applied.

Here is what I think happens in a "typical" death from "Excited Delirium Syndrome":

1) Police are summoned to take into custody a violent or potentially violent person. Being the police, they are expected to actively take action to deal with someone, especially if they are actively violent at the time. Sometimes I think that they take physical action too quickly when the person they are dealing with is not actively violent. This may be due to what we term "production pressure" in medicine (the push to get things done so you can move on to other important things), or it may be due to inadequate training.

In a typical scenario, once police arrive they typically want to control the situation as quickly as possible. Lack of control means too many variables, and too many variables means too many chances for someone to get hurt. So they rapidly progress thru their "use of force continuum" until they get control of the situation. This continuum differs a little from jurisdiction to jurisdiction, but typically looks something like this (from Wikipedia):

1. Presence
2. Verbalization
3. Empty hand control
4. Intermediate weapons (e.g., chemical, electronic or impact weapons)
5. Deadly Force (any force likely to cause permanent injury or death)

What I believe typically happens is that the officer, thru physical presence (man standing confidently in uniform with gun) and verbalization (may start with asking for compliance, rapidly progressing to orders of compliance-"come here, turn around, get down on your knees, etc.)tries to get compliance from the subject. Not getting the desired result, I think most officers resort to

2) Hands on techniques. Usually these start innocently enough as a gentle laying of their arm on the suspects arm or shoulder to get them to comply or come along, but then progresses to joint locks, arm bars, hair pulls, and other techniques to coerce compliance. I think it is at this point that things start escalating quickly. The police officer involved certainly has a lot of endogenous epinephrine (adrenaline) flowing in his veins, making it more difficult for him/her to judge how much force they are applying and for how long. The subject, especially if they have a hard time understanding what is happening (either because of drug/alcohol intoxication, language difficulties or cognitive disabilities) also has gone into a "fight or flight response" and starts fighting for their life. The police officer(s) now involved sense what is a very disorganized scene and rapidly escalate their responses to gain control. This may involve choke holds (which have been banned from many departments) or may involve multiple people striking the subject and/or "piling on" them to subdue them. This leads to what is a critical juncture, namely

3) Loss of ability to breathe for the subject. If a person has not been fighting forcefully up to this point, then they certainly will now. I've seen 80 year old sweet grandmothers become markedly violent when they can't breathe. It's a primal instinct. We can only go 4 minutes at rest without breathing. This time is markedly shortened when we are also expending maximum energy in trying to regain our airway. Officers may or may not recognize that they have compromised a person's airway at this point. I suspect that they are focused on subduing the person, not getting hurt, and not letting anyone else get hurt.

Not being able to breathe, while rapidly using up all your oxygen will predictably lead to unconsciousness. There will be a short period of time where recognizing the person is unconscious, rapidly acting to get everyone off them and open their airway, and administering mouth to mouth resuscitation will revive them. This period will be fairly short in length, though, and probably missed, leading then to

4) Cardiac arrest. At this point the person has quit struggling and the officers have spent time applying handcuffs to their wrists (and possibly restraining ankles also) with the person in the face down position. This makes it difficult for them to recognize that the person has indeed arrested, and failure to quickly resuscitate the person leads to

5) Certain death.

In analyzing the above scenario, there are a few critical points where decisions made can end up snowballing into possibly catastrophic consequences. The first point is the initial laying on of hands by police. If a person is actively trying to hurt another, then the police's hands are tied. But if they are not hurting anyone else, then I think that staying verbal longer can avoid some negative outcomes. The gentle laying of your hand on someone's arm can be soothing to many, but it can lead to atypical reactions in some populations (like autistics). Most people with autistics in their immediate family know that touching them when they are excited is not usually a good thing. At the least they involuntarily pull away, at worst they may lash out (usually indiscriminately). So even though it may take longer (sometimes a lot longer) to talk someone down, if it resolves the situation then it's a good thing.

The second critical point in the above scenario is in recognizing that the person's airway has been compromised. This is admittedly very tough in what has now become a fluid violent situation, but I think that if there is increased awareness of this possibility that there will be increased recognition and proper treatment when it happens. I also think that the police might want to borrow something from medicine.

Whenever we run a "code" on a person, if possible we designate a person the team leader, and that person does not get involved with manual tasks such as chest compressions, starting IV lines, giving drugs, etc. Their main role is to make decisions and constantly reevaluate the entire situation. The senior police officer on the scene has to try (if possible) to not become physically involved. This is admittedly very tough when the situation is not in control, but there is a greater chance of someone recognizing when things are going awry when they are not physically involved in subduing the individual. If they have to become physically involved in subduing the individual, then they need to rapidly back out of that role as soon as possible.

The next critical step is one that I do not believe occurs at present. That is, immediately after a subject stops moving in such a situation, someone needs to verify that the person is breathing. Often I suspect that the police, having gone thru their own "fight or flight" response, are very jittery and coming down from this at this time, feeling a bit more relaxed as the suspect is restrained. But this is a critical point in the confrontation, when seconds lost can have disastrous consequences for the subject. While there may be a feeling of "they got what they deserve" for fighting back at the time, as police can also be injured in these events, I don't think that upon calm reflection any police officer would think that any person "deserved" immediate death on the street for resisting arrest. Increased recognition of loss of airway commonly occurring in these situations needs to be stressed in training of officers, as well as ways to recognize and deal with it to prevent further injury to the subject.

In light of the above, and since police officers are not really trained to act as first responders for medical issues, I would think that policy should be changed such that paramedics are on the scene before any person that is not violent is approached with physical measures. This suggestion will certainly result in a large uproar from those in emergency services. But I think that in terms of preventing lives lost it may be necessary.

Sunday, May 27, 2007

Sex Ed

photo credit-Just Some Chick with a Camera

I knew that there would come a time that we would have to talk about the birds and the bees with the kids. Little did I know that questions would come so soon...

As you may recall, Sweet Pea has had a fascination with having a baby for over a year now. It's not quite an obsession, just something that never seems to be far from the surface.

Liz related this story to me the day it happened. A couple of weeks ago Liz was driving Sweet Pea home from pre-school. They were on the way to pick up Buddy Boy from his school. Sweet Pea, ever the little Miss Gabby, was going on about all the kids at school, the birthday party she was going to that weekend, and what she wanted for dinner.

All of a sudden she jumps right in with "When the man puts the seed in the woman, does it hurt?"

Liz reads a lot of science stuff with Buddy Boy. He knows a lot of facts about a lot of stuff. Sweet Pea usually acts as if she's not paying attention, but evidently when they were talking vaguely about sexual reproduction in some animal she was all ears.

When Liz related this to me, I was like "What? Well, what did you say?" I usually believe in not lying about such things, but 5 years old??? I was hoping she came up with some distraction or vague answer. Failing that, I must admit that I hoped she lied.

"I told her no, it didn't hurt".

"What?! Have you forgotten that we were raised Catholic? Are you totally unaware of the power of instilling guilt? You should have told her that there was nothing more painful in the whole universe (I was only half joking)! Then what did she say?"

"That she wanted a hot dog for dinner."

I am so not ready for any of this yet.

Saturday, May 26, 2007

The Child Whisperer

photo credit-shutterblog

There's an acquaintance of mine that lives in the Seattle area (I'll call him Ed). He lived in Asia for several years, then moved back to the states. His wife and he ended up divorcing, and his two sons lived with him. They were still pre-teens/early teens, and the divorce was as hard (or harder) on them as it was on him.

Ed is a counselor by training and profession, and after the divorce had problems with his own two kids acting out. He related to me once how every night when they were sleeping he would sit by their bedsides and whisper softly to them. He would tell them how much he loved them, and talk positively about some aspect of each child each day. He said there's no way of telling if this ever influenced them, but gradually they all got better.

Something about this story struck me, and as I was a new father at the time (we had recently adopted Buddy Boy) I incorporated this into my bedtime routine with him, and later with Sweet Pea.

So in addition to reading and singing to the kids, I would whisper things to them. I would tell them about how great they were, how Liz and I loved them to the moon and back, and about all the wonderful things they would do when they grew up.

I don't do this as much with Sweet Pea or Buddy Boy at bedtime anymore, but I have continued this with Buddy Boy in the middle of the night.

Buddy Boy, like many kids on the spectrum, has had some problems with toilet training. His sister pretty much self trained at 3 years old, but with Buddy Boy it's always been a bit of a struggle. At 7 he's fine during the day, but unless we wake him up to take him to the bathroom during the night he's sure to be wet in the morning. Even with taking him at night there are still about 30% wet mornings, but at least if he's been taken at night it's confined to his pullups, and doesn't spread to the rest of the bed.

When I take him to the bathroom and lead him back to bed he's basically sleepwalking. If I don't guide him where to go he would probably bump into something. After taking him back to bed I will usually whisper a few things to him. I tell him what a great kid he is, and how I'm proud of him because of (something that he did good that day). I tell him how much fun I have with him, and how happy I am that I'm his father. I don't make it too long, and whisper very softly, for I don't want to wake him up (especially as we've been having sleep issues).

Usually he just lies there, looking as beautiful and peaceful as he did as a baby. But sometimes as I'm talking I see a smile come across his lips, and I know that I've penetrated his subconscious on some level.

It's one of those pure father and son moments that bind us together. I think it helps both of us know that no matter how hard things are, we will always have our love for each other. And that that love makes the two of us together stronger than the sum of what each of us brings to the table.

I'm going to miss this when he doesn't need us anymore to assist him in the middle of the night. I might have to slip into his bedroom just to whisper to him for the heck of it.

Wednesday, May 23, 2007


photo credit-Aroid

Well, this last weekend marked a momentous occasion for Buddy Boy.

He went to a birthday party!!!!!

I was beginning to think he'd never get invited to one again. The last time he was invited to a party was over 2 years ago. When he was 4 he was on the edge of "the parents just invite whoever is in the class, even if they don't know them" stage. He then entered into the "Buddy Boy's the oddball kid who throws tantrums" stage of recognition (by peers and parents) and I thought that his days of going to parties (he had only attended a few, with only limited success) were over.

But one of his classmates from his regular classroom invited him to a birthday party. It was a bowling party, which was a good thing. Bowling used to be something that was definitely sensory overloading. One of the parties that he had gone to a couple years ago was a bowling party, and although he had wanted to go to it, he had a meltdown that was probably sensory in origin (can you think of a place much more loud and echo-ey?).

But last summer he was involved in a summer camp thru Giant Steps, which for those who don't know is a private school that specializes in autism. They had tons of field trips, including a weekly trip to a bowling alley. The long and short of it is that Buddy Boy loved going bowling, to the point of it becoming incorporated into his OCD behaviors. He perseverated for a long time on acquiring a bowling ball. He asked my sister, the chemist, if she could make him one. He googled "free bowling ball" on the web and found dozens of bowling ball sites-"Look dad, I don't think this one costs that much!"

So I was glad that it was a bowling party. It was something he liked, and it had a structure that he would understand, and foster some limited interaction with the other kids.

As it turned out, Liz took him instead of me. I'm usually the designated escort for both kids to parties, but I was involved with taking down a 40 foot pine tree in the back yard, and was up against having not enough time to finish the job.

Liz reported that he did reasonably well. We had written out and reviewed various things with Buddy Boy ahead of time, which we think helps. Buddy Boy didn't have any meltdowns, didn't interact much but remained basically socially appropriate, and said he had a good time. In my mind, a roaring success!

I only hope we have the opportunity to do it again.

Monday, May 21, 2007

Things that bug me

I've talked about how we had a pretty good IEP meeting with the school this year. But there are a few things that still bug me. As these things aren't what I consider the "most important" things, we haven't pushed real hard on them up to this point. But they're still important, so we are still formulating how to go about effecting change over the next year.

The first thing is how Buddy Boy is treated at lunch. Sometimes he doesn't want to eat lunch. He takes an ADHD med to help him concentrate at school (it works reasonably well), but one of its side effects is that it decreases his appetite during the day. Sometimes he's hungry and wants to eat, sometimes he doesn't. We don't care, as Liz always gets a good breakfast in him, and he eats when he gets home (after his med has worn off).

The school, however, has taken to punishing him when he doesn't eat his lunch. If he doesn't eat his lunch, they won't let him go to recess, which is his next thing after lunch. Liz has tried explaining this to them, but they still don't get it. Basically this bothers me on a couple of different fronts. First, he's our kid, not theirs. He's of normal height and weight. There is no medical reason that he needs to eat lunch. And we've told them its OK if he doesn't. But they think that their judgement should supercede ours in this matter. What's up with that? Secondly, we place a high value on recess. We think it helps to have physical exercise, opportunities for social stimulation, and just plain time to wind down in the middle of the day. So withholding recess is (in our minds) withholding a vital part of what we consider therapy and teaching for Buddy Boy.

The next thing is that they don't have anyone walk him from class to class, then "write him up" when he doesn't get to where he's going. I think this is one of those things that comes from assumptions being made because he is very verbal. This last week he got distracted/interested in something outside while transferring from one room to the next. So he left the building. This is the first time he's left the building this year. This, of course, caused a mini-panic at the school, resulting in 6 people going after him, and Buddy Boy initially running from them before returning to the building. For this he got written up and spent the rest of the day doing "independent work", rather than being taught by teachers.

I'm sorry, but easy distractability is part of who Buddy Boy is. And we think it's necessary for the school to make sure that he gets from one room to another. I don't think he's being "bad" when he takes off, and therefore don't think he should be punished when he does. Just becuase he's verbal, doesn't mean his internal regulation is up to snuff when compared to his same aged peers in 1st grade. I think it's something they need to deal with, and not make a discipline issue.

Finally (for now) one thing really bugs me personally. It's something that his school did last year, and continues at his school this year. At every IEP meeting, they ask us what meds Buddy Boy is on. Like it's any of their business. Haven't they heard about patient confidentiality? And what are they doing with that information? The school nurse needs to know what to give him when. Beyond that, they have no need to know anything.

At this year's meeting they asked us what he was on, and I bit my tongue and let Liz respond. One of the meds he's on is Guanfacine. So Liz mentions this, and one of the teachers asks "Isn't that cough medicine?" No, I think. that would be Guaifenesin. Liz justs says no, Guanfacine is a blood pressure medicine that is sometimes used with autisitics.

I'm a doctor. I practice in a field where knowing drugs is central to what I do. These people are teachers. Every time they ask about Buddy Boy's meds I want to say "Why do want this information? And what will you do with it? Can you even interpret it? Because unless you can tell me the mechanism of action of each drug, how it interacts with other drugs, what its alpha and beta half lives are, and volume of distribution, you have absolutely no right to ask that. Because any decision you may make because of your limited knowledge may be totally wrong, and deleterious to my son."

What makes me most upset about the asking about the meds thing is, if they're making like they are knowledgeable about a field that I obviously know they are not, what other things are they equally unknowledgeable about that they think they know?

Tuesday, May 15, 2007

Autism in Black and White

photo credit-Blisterman

Earlier today Kristina Chew on AutismVox had a great blog about “Race and Age of Autism Diagnosis”. I started to write a response on her blog, but after I got to 4 paragraphs thought I should just write my response here, rather than totally hijack her blog.

I have seen studies that relate how blacks are diagnosed at a later age than whites, and have not been surprised. Because of my unique position (white physician parenting an autistic bi-racial (African American/Caucasian) 7 year old, I have a few things to say on the subject. About the only thing that could have made this article more relevant to me would be throwing adoption into the mix (both our kids are adopted). But even if you’re part of what I perceive to be a mostly white middle class (I think you have to start off rich to be upper middle class and parenting a special needs kid) blogging audience, I invite you to read on, as I think a lot of the issues are similar to the discrimination that autistics in general are subject to.

First (and perhaps most importantly) blacks and whites in this country generally don’t talk to one another (not exchange pleasantries at work, but really talk). In the absence of a true dialogue, opinions on both sides are mostly informed by stereotypes and the media. In the parlance of autism, blacks and whites just don’t “get” each other.

Think about it. If you’re a white American and reading this, you might have to think a while before agreeing with the statement “The majority of blacks in America have a job, are not on welfare, and don’t live in the ghetto.” You might have to think a bit longer before agreeing with the statement “The majority of blacks in the ghetto are not criminals”. And you might not realize that just under half (about 47%) of blacks own their own home. The media in this country (popular media as well as the news) portray average blacks as unemployed criminals playing rap music extremely loudly and having multiple kids with multiple different single women in the ghetto.

If you are black, consider this. I was in the locker room at the YMCA the other day (I don’t work out nearly as much as I should) and I overheard a couple of black guys in their late twenties talking. One of them was telling the other about how the main purpose of the electoral college is for whites to disenfranchise blacks. I was like “Huh?” The electoral college (for those outside of the US) is to keep smaller rural states from becoming disenfranchised. It was set up when the country was founded (when blacks voting wasn't even a consideration). And if anything, it empowers minority voters in each state, where a minority population can swing all of the electoral college votes of that state. There are many other examples of things that many blacks believe that just aren't so, such as that AIDS is a disease that was purposely introduced into the population by the US government to kill off black citizens.

When it comes to cultural differences, there are certainly many. Consider church services. Think of the difference between a fairly staid mainstream Episcopalian service full of white people, vs. the hand clapping, organ and choir singing found in the African Methodist Episcopal (A.M.E.) Churches often found in African American (AA) communities. AA culture encompasses a wider range of acceptable exuberance for various times in public (besides being in church). But this does not mean that AA parents cannot recognize when behaviors are abnormal in their children.

Now let's move on to how blacks interact with, and view, organized medicine. Blacks have a latent distrust of the medical establishment, stemming at least in part from things like the Tuskegee syphilis experiment, started in 1932, where 400 black men who had syphilis were studied to see the natural course of the disease. The men were not told they had syphilis. Although there was no treatment for syphilis when the study started, by 1947 there was, and antibiotics were withheld from the men in order to continue the study. The study was only stopped in 1972 when public health officials leaked it's existence to the press. Not medicine's finest hour (to say the least), and little wonder that many in the black community still don't believe what doctors tell them, even if they're trying to help them. Also it's no surprise that many AA's avoid doctors as a general rule.

There are a number of factors in the doctor's office that also contribute to poor communication, which leads to delayed diagnosis. First of all, doctors (like all people) relate well to those like themselves. If their patients are middle/upper middle class and white, white physicians are more likely to relate to them on a personal level and take their complaints seriously. When patients are perceived to come from a lower class, than doctors are more likely to assume a paternalistic role in dealing with the patient, rather than a cooperative one. And given the general perception of blacks as a whole, unless Bill Cosby walks in as a patient, the fact that the patient is black has him/her perceived to be of an inferior class by the doctor.

Because blacks, while employed, are more likely to have jobs that don't include medical insurance they are less likely to have a regular physician that they visit. They are more likely to receive episodic care by different providers on each visit in Emergency Rooms.

Complicating matters, at the present time in disadvantaged minority communities seeking education is seen as selling out, and "acting white". After all the hard fought battles for equal education, many in the black community don't seem to value it. This can lead to a delay in seeking help that would lead to increased educational services.

Finally, as pointed out by Sarah in response to Kristina's blog, a lower level of educational services being available for disadvantaged kids may provide less incentive for their parents to seek a diagnosis. I am not sure if this is correct. I know that in the city I live, there are fairly comparable services available to all comers. There may be an assumption in the AA community that since general education services are less then special ed services would also be less, but judging from posters on a local listserve, this isn't so.

So we have a combination of negative societal perceptions of blacks, poor communication between doctors and patients from different cultural backgrounds, a general distrust of the medical system by the AA community, a perception (and perhaps reality in some cases) of lower level of services being provided once a diagnosis is made, and at times less value placed on education by the AA community combining to make it seem nothing short of miraculous that diagnoses are made at all.

The general perception of blacks (especially young black males) as being more likely to be criminal, or at least anti-social, also leads to greater use of diagnoses such as oppositional and defiant disorder (ODD) instead of outbursts being recognized as being part of autism.

For our part, Buddy Boy was first given a series of diagnoses (developmentally delayed, sensory integration disorder, ADHD) before he was diagnosed at age 4 with PDD-NOS. I don't think he necessarily was diagnosed later because of his race. But I do recognize that since his parents are white (and one of them is a physician) that those factors may have totally negated any affect race may have had on his being delayed in diagnosis.

Lastly, I think it's important to recognize such things as the impact of race, since by studying it we may gain some insight into how overt and subtle prejudices can affect how all autistics (as a minority group) are treated.

Sunday, May 13, 2007

Happy Mother's Day

photo credit-coolwater32

Here's to moms. All moms. But especially those who have special needs kids.

It's the 21st century and all, and women have achieved an equal place in society in many ways. When it comes to families with special needs kids, however, one almost always finds that it's the moms that bear a disproportionate burden of taking care of the children. Whether that involves putting aside her own career to stay home, modifying her career path in order to be more accessible at home, or burning the candle at both ends in order to also take care of her children, it's still the moms that generally are in the front lines of child care, especially with special needs kids.

This is not to denigrate all of the great dads out there doing there part, and I'm sure that there are dads that do as much, if not more, than the moms. But for whatever reason, it's mostly moms that you'll find taking the kids back and forth to school, going to most of the IEP meetings, and co-ordinating care between the various doctors, therapists, and others involved in caring for their child.

Moms never doubt that they have the best kids in the world. And moms instinctively (and at times, ferociously) fight to protect their kids against unfair barriers and advocate tirelessly on their kids behalf in systems that are stacked against them. They love their kids completely and endlessly, no exceptions. The thought of giving up on their kids never enters their mind.

So here's to all the moms in the world. You've cared for us, pushed us, educated us, advocated for us, and thoroughly loved us. Without you we'd be lost.


Friday, May 11, 2007

Record Time

photo credit- epc

Well, we just had our shortest (and least contentious) IEP meeting ever-one hour, 20 minutes! Buddy Boy is finishing up 1st grade, and this was to review and plan for 2nd grade.

Our last IEP meeting (actually series of meetings) came in at over 12 hours. And both sides had lawyers on the clock. As things have been going better lately, we decided to go in without our lawyer (for the first time in a long time). We figured we could just call a stop at any time and reconvene with the lawyers if they started to throw any curve balls at us.

What a refreshing change. For whatever reason, Buddy Boy has been doing well the last couple of weeks, and I'm sure this helped. But even in general, things are worlds different than last year. There haven't been the problems with physical aggression in school like he used to have. The school has responded by starting to integrate him with his NT peers for some of the "specials" (art, computer, music, and this week, PE). He's been doing reasonably well, as they've provided an aide to go with him when he does these things (something they adamantly refused to do last year at his other school.

Despite his increased success, they haven't tried to decrease the amount of support (OT, language, social skills) he gets, and haven't tried to change his Behavioral Support Plan (we think they just don't want to rewrite this long document that took us months to hammer out last year, but that's OK. Even though he isn't needing most of if right now, we still want it as a backstop).

The team agreed to start Buddy Boy off with inclusion with support in all of the "specials" next year (which will only mean adding Spanish class-we figure we can work on getting him up to speed with his peers in Spanish over the summer).

There were only a few minor things we needed changed. One was that they lumped some of his OCD behaviors (nail biting, playing with fingers) with behaviors he exhibits when he is trying to avoid work. They didn't object when we pointed out our objections to this. The other things were getting things written into the plan that had been only verbally agreed to. We wanted to make certain that there were no ambiguities.

We learned of a couple of changes for next year. One major thing is that his special ed classroom teacher is leaving. She's been good for him this year, and we're sorry to see her leave. We'll just have to hope for the best with whoever replaces her. Luckily at least two of the support people (aide in the class and speech therapist) are going to be the same.

We left the meeting feeling happy, though not totally comfortable. After getting burned big time last year, it's hard not to think that there may be land mines waiting for us around the bend. Trust is a hard thing to rebuild, once it's lost. Since many of the players are different this year, we see it as possible, though still difficult.

Now it's onwards to summer!

Thursday, May 10, 2007

I Believe in Guardian Angels

Well, the last week or so has been pretty good for Buddy Boy (and for us). We've all settled back into our somewhat regular routines, and our days have been fairly uneventful. So I guess I'm ready to relate what happened almost three weeks ago now. I'm not a guy that gets rattled (shaken up) very easily. Just a month ago I pretty much laughed off an incident when Buddy Boy got ahold of Liz's car keys and started up the car in the garage. But this incident I'm going to describe really upset me, and I'm only now getting my sense of equilibrium back.

I awoke at about 5:15 AM (my usual time). As soon as I exited our bedroom to go to the bathroom down the hall I smelled burnt popcorn. I immediately got a sinking feeling in the pit of my stomach and proceeded downstairs. I saw (and smelled) the following things in rapid succession (not necessarily in this order):

As I passed the family room I heard and saw the TV was on. Buddy Boy was nowhere to be seen.

I followed my nose to the kitchen. I saw Buddy Boy sitting at the kitchen table eating burnt popcorn out of a bowl that we use for popcorn, which is stored in a cabinet above the refrigerator. He appeared unharmed, and safe.

The top of the hot air popcorn maker was half melted, and it was still half filled with burnt popcorn, which spilled over the counter and floor.

There were several pieces of burnt 8.5" x 11" pieces of paper on the floor, as well as a big black burnt spot on the kitchen tiles (about 3 feet around). The air smelled not only of the burnt popcorn, but also of smoke. Our smoke alarm had not gone off.

There was black soot that covered a lot of the stuff in the kitchen (Liz later informed me that she cleaned off soot from things in the dining room and living room, too.

I saw a small mound of melted blue wax from a melted birthday candle on the floor.

The oven door was open, and a baking pan was sitting on the door of the oven. The pan was filled with a half baked yellowish mass.

After quickly ascertaining that there was no acute danger, I ran to Buddy Boy and hugged him. And I trembled. I was scared.

I have always had a healthy respect for (and perhaps a little fear of) fire, ever since the time when I was about thirteen, when my then 3 year old brother almost burned down our house with a candle when I was babysitting him and two other siblings. I managed to extinguish that fire with a fire extinguisher with the only damage being a buckled tile floor, a burnt chest of drawers, and a singed set of curtains. It was real close to a disaster. I have always kept several fire extinguishers around the house, have smoke detectors on every floor, and have an escape ladder stored in my closet upstairs. Our house was built in 1880, and though we have lived in it since 1998, I have yet to light a fire in the fireplace.

After quickly ascertaining that Buddy Boy was OK, I decided that this scene was too terrible for Liz to see as is, and that I would try to quickly clean up as much as possible, as fast as possible. I didn't want Liz to feel the same panic I was feeling.

Buddy Boy asked me if it was the middle of the night, and if he should go back to bed. I just had him sit down.

I grabbed the garbage bag out of its container and I started shoveling things into it. The popcorn and the burnt papers were the first things in. Then I got a scrub brush to try and get the big burn mark off the tile floor. I got the majority of it off before Liz walked in. I filled her in on what I knew, and after a little while she took over while I was able to escape to work.


Buddy Boy has become "sneaky" as of late. We keep a "baby monitor" in his room (as well as in Sweet Pea's). Our house walls are solid, and these monitors allow us to hear them if they cry out in the middle of the night (they also allow us to hear single songs on a CD played over and over all night long, too). Buddy Boy knows we have the monitor in there, and he knows we know if he shuts it off (which he has tried to do a couple of times). He has learned to be very quiet in tiptoeing out of his room and carefully opening and shutting his bedroom door. We have caught him a couple of times after sneaking out of his room. He's never done anything other than watch TV or go to sleep in another room. Nothing even close to this incident.

We've also been battling some sleep issues with Buddy Boy. We thought Melatonin was working, but had had a few nights where he had a lot of trouble falling (and keeping) asleep. Eventually he had always gotten to sleep, though.

Over the next couple of days, Liz and I pieced together the approximate sequence of events.

Buddy Boy has always been quite adept at operating the TV and cable remotes. When he was two, he couldn't talk, but he had the basic functions of the remote (on/off, volume, channels) mastered. He now is faster than any of the rest of us at operating the three remotes necessary to control the TV, cable box, and the VCR. He can scroll thru the menus and find whatever he wants. We put a password on for the pay per view stuff, as he once ordered up a cartoon movie without asking.

Buddy Boy evidently must have come out of his room fairly shortly after we had gone to bed. He had watched three full length animated movies (as we ascertained from the cable menu). That alone must have taken him almost 6 hours. That's when he evidently got hungry, and moved to the kitchen.

Buddy Boy related that he used flour, butter, and water to make himself a "cake". Though proud of his industriousness, he could have burned himself badly handling hot stuff from the oven.

Having failed to make himself something that tasted good, he proceeded to the popcorn. Again, having overfilled the popcorn maker and left it on too long, another hazard (this time fire) was averted.

At some point Buddy Boy decided to play with the birthday candles. He got them out of their storage place in a high cabinet, and also got some matches out of the same cabinet. We think he lit the matches from the stove, then lit the candles (we later found the remains of at least three candles, one of them in the living room-he said he wanted to take fire to the fireplace).

I consider it just short of a miracle that no one was hurt (not to mention that the house was still intact). I have thanked G-d many times since that day for protecting our son and the rest of our family. I have also been mad at myself for not being more careful prior to this.

The hardest thing I've done since this is install a metal hook/eye lock on Buddy Boy's bedroom door. Liz and I talked about it for a couple of days before doing it, but didn't see any other way of assuring protection for all involved. Our burgler alarm would alert us if an outside door was breached, but if we activate the inside motion alarms, none of us would be able to walk around without setting it off. I feel terrible as a father, locking my kid in his room at night. I think of the wooden box and padded room that were used for discipline in a school that Buddy Boy was in for a while last year, and wonder if I am just as bad. For his part, Buddy Boy has taken the lock on his room in stride. If this becomes a long term issue, I'll probably talk to the alarm company and get his door wired into the system somehow. But for now we have the lock. I tell myself that if Buddy Boy really needed to get out of his room in an emergency that he is stronger than that lock. And that the act of him breaking the lock would create enough noise that we would hear. But perhaps I am just placating myself. All I know is that neither Liz nor myself got a good nights sleep for the two days until we installed the lock (and for a few days after that, too, until we trusted it).

We've talked several times with Buddy Boy about several issues (lying, trust, SAFETY) but aren't sure what is sinking in (especially as this incident was less than two weeks after the starting the car incident).

But as I started out saying, the last week or so has been good. Buddy Boy has had several good days leading up to his IEP (I always hate the psychological disadvantage of going into an IEP with recent "bad" days having occurred-they seem to become disproportionally important to the "team"). And the sleep issues seem to be a bit better, having changed to a prescription med.

I don't know if Buddy Boy will think less of me for having installed the lock, but I do know I need to keep him safe.

Tuesday, May 8, 2007

An Encouraging Sign

photo credit-Steve Brandon

St. Louis Police Chief Joe Mokwa announced Monday that a special law enforcement task-force has been assigned to the Christian Ferguson case.

He was 9 years old when he mysteriously disappeared from the SUV his father was driving, at a north St. Louis intersection, on June 11, 2003. Dawan Ferguson told police that Christian was in his car when it was stolen. Dawan had gotten out of his vehicle to use a pay phone at Skinker and Page. ...

So begins a story from the online site of KSDK, a TV station in St. Louis, Missouri. It's not unusual that the police would take a close look at such a case.

...Mokwa said the new task-force will consist of a sergeant, two detectives, two FBI agents, and a command officer. ...

which are a lot of resources to devote to just one case. What's even more unusual is that they are doing so in a case where the victim was poor, black, and severely physically and developmentally disabled (as far as I know he was not autistic, but you get the point).

In this case, the father of the child reported that he stopped to use a pay phone, and left the child in the car. While he was reportedly on the phone he says that the car was carjacked. The empty car was found two hours later a few miles away.

There were many inconsistencies in the story, such as the fact that the father had a cell phone in the car at the time, and a witness who reported seeing the car at the place where it was found at approximately the same time that it was reported stolen. The police reportedly never believed the father's story, but have turned up no evidence of foul play thus far.

I've been critical, as well as worried, regarding how society and law enforcement deal with the death and treatment of disabled individuals. So I have to be even handed and give props to Chief Mokwa of the St. Louis police department for pursuing this case, even though the family is not wealthy or politically connected, and even though the child was severely disabled. The world would be a better place if there were more such individuals who recognized the humanity in all individuals, and who were willing to stand up for those without the power or means to stand up for themselves.

Lastly, let's hope that anyone that knows anything with regards to what really happened will stand up and be counted.

Friday, May 4, 2007

Et tu, Brute?

photo credit- SeraphimC

What could be worse than making an ignorant statement regarding someone with a disability? Why, to make it on Blogging Against Disablism day, on your blog, while blogging against disablism!

Two days ago I wrote about my fears regarding when societal attitudes regarding race intersect with ingrained reactions of police when they encounter citizens with autism. And, as Tokah pointed out, while talking about how autism is an invisible disability, I said,

"...You're not confined to a wheelchair, you don't need a cane, and your body moves just fine. ..."

Tokah rightly (and kindly) pointed out that a chair is an instrument that facilitates mobility, and not one of confinement.

At first, I couldn't believe I had actually said what I did. I didn't remember saying that, and had to go back and check the text to see that I had. I mean, I'm in the middle of blogging about attitudes about the disabled, and then I say something totally ignorant. Especially considering I spent almost a year (I said a year in my reply to Tokah, but it was really only 11 months) in a chair when I was young. One would think that having gone thru that experience, I would be a little more careful in my language. But evidently I subconciously incorporated that time as being "confined" to a wheelchair, even though I've always felt that that experience gave me special insight into the lives of those who always need to depend on a chair to get around.

When I was 13 I had an operation on my legs. When I started high school, I was in the chair for all but the last month of my first year. In retrospect, it was a little unusual, as new people I met initially assumed I was permanently disabled. I got a lot of that "poor you" pity thing, where I could tell people felt sorry for me because of the chair. I also felt that a lot of people never saw past the chair, and for them, that was how I was defined.

I don't know if my thought process of thinking of myself as being "confined" to a wheelchair was a thought that I developed myself, or whether it was the attitudes of those around me that I incorporated. I've changed a lot since those days, and consider myself to be relatively enlightened when it comes to disablism, but my writing that two days ago indicates that there are places inside me that I didn't really know existed.

I am not a high quality wordsmith like many who blog. But I do realize the importance of language. How we name things and talk about things does matter. And while I am a firm believer in free speech and don't feel that the whole world has to be "PC", I am also a firm believer in courtesy and respect for other individuals. So for any others that noticed my gaffe, I apologize, and I'll try to do better.

I'll be out of town for a little R and R and probably offline until late Monday. See y'all when I get back!

Tuesday, May 1, 2007

Dark Thoughts

My blog contribution to "Blogging against Disablism" Day

Everyone has secret fears for their child with a disability. For some, it's that their child will grow up alone, without friends. For others, it's that their child will some day be institutionalized, with all the terror that may involve. For me, it's that my son will some day be shot and killed because of his autism. Or rather, because of the fact that he is autistic and black.

One of the less pleasant aspects of Buddy Boy's being autistic is that he frustrates rather easily, and responds in what are usually considered inappropriate and belligerant manners. Don't get me wrong. 95% of the time Buddy Boy is the sweetest kid you'd ever want to meet. His speech may be a little stilted at times, but he's loving, considerate, smart, and funny. He's progressed in his ability to control these outbursts as he's matured, but we still have a ways to go (and I don't even want to think about puberty).

The other day he ran off the sidewalk into the grass and crashed his bike. I had been pedaling ahead of him at the time.

"DAD!" he says, getting up. He scrunches up his face (looking angry), points his finger right at me, and continues-


A few soothing words and a calm manner result, as they usually do, with a quick de-escalation of hostilities, and a response of

"I'm OK. Sorry, Dad."

And father and son continue on their way.

But every time such an episode occurs, there is a vague fear stirring in my gut, one which I don't often consciously acknowledge, it is so dark. One which tells me that 9 years from now, should my son acquire a driver's license, the following might occur during a traffic stop for a minor traffic violation:

"License and registration, please."

"What's wrong? I DIDN'T DO ANYTHING!"

"Just settle down, son."

The police officer lightly places his arm on Buddy Boy's. Buddy Boy flinches and pulls back. The police officer starts to get nervous at the large black angry teenager. He places one hand on his gun.


"Keep your hands on the wheel".

In the moment, Buddy Boy does not process this as a command. He has just processed the request for his license and registration.

Buddy Boy's initial flare is starting to abate, and he quickly reaches for his wallet to show his license.

The reaching for his wallet is misinterpreted as him going for a weapon after being told to keep his hands on the wheel, and...

If you think this situation is far fetched, then you don't remember Amadou Diallo.

Liz and I are parents thru adoption. We are both white, and the kids are both bi-racial (African American/Caucasion). Buddy Boy's birthfather was built like a football player, and I expect that Buddy Boy will be a big guy, too. Before adopting, I considered that one of the biggest problems that we might face was racism. By the time Buddy Boy was two and a half, I realized that his (yet to be diagnosed) autism was probably going to be our biggest challenge. Now I realize that both may interact in the future to create unique challenges.

"Driving While Black" is a well documented phenomenon, that results in more blacks (especially males) being stopped for traffic violations, and more tickets and searches performed on them. It's an expected part of growing up black in America. Even black police practice racial profiling. And it doesn't matter if you're well dressed, or have small children with you. Johnny Cochrane (O.J.'s famous lawyer) used to be an Assistant District Attorney in Los Angeles. Once, while well dressed and driving home with his two young children in the car he was stopped by the police, who approached the car with guns drawn. They removed him from the car, and it was not until they found his badge that they backed off. It happens to blacks all across America every day. I do think the police need some lattitude in pulling over suspicious looking people. But they have proven time and time again that "all blacks look alike". It doesn't matter if the black person is well dressed or well mannered. What the police see is "potential criminal".

Autism is an "invisible" disability. You're not confined to a wheelchair, you don't need a cane, and your body moves just fine. [EDIT-Please see my follow up comments in "Et Tu, Brute"] In my son's case, he is also very verbal. His speech at times is stilted, and sometimes scripted, but it takes a bit to pick up on that. And when you have an invisible disability, people don't necessarily make (or feel they have to make) accomodations for you.

Police officers are trained to control situations. They are given authority to keep the peace, and they are also given wide lattitude in enforcing that peace. Citizens, for their part, are expected to defer to the authority of the police, and resolve conflicts in a court of law. One thing that the police, in general, have very little training in is relating to autistic citizens.

As a result of this lack of training, there are way too many opportunities for misunderstandings that result in escalation of a police officer's response. Police officers are usually trained in a "use of force continuum" where they are expected to use the least amount of force in order to obtain compliance. A little less than 20% of arrests involve some use of force, and use of force is reported to occur more frequently where drugs, alcohol, or mental illness is involved. Of note, initial levels of force usually involve the "laying on of hands" in some manner on the "suspect". When an autistic person reflexively recoils from contact with someone he doesn't know in a stressful situation, the police officer is then justified in moving up the ladder of the "use of force continuum". This may involve other "non-lethal" methods of restraining someone, such as Tasers, which can very definitely be lethal at times. Anytime the officer feels his life (or other citizens around him) are threatened, he is justified in using lethal force.

I have no hope of curing racism, bigotry, or racial profiling in the next 9 years. I do hold out some hope of influencing police forces' education and training in dealing with autistics. Why? Autism knows no barriers. Rich, poor, black, white, everyone gets autism. And statistically that means that even some police officer's kids are going to end up on the spectrum. I expect that in many departments some officers will speak up, and demand proper training for their peers. One study documented that autistics were 7 times more likely to have an encounter with the police than NT's were. It's in the police forces' self interest to get those encounters right. Signs of this beginning to happen are encouraging.

For my part, I have been writing my legislators to advocate for mandatory police training in autism for our state. And one of the things I am trying to instill in Buddy Boy is compliance with law enforcement officers. I hope they listen in time.