School Ups and Downs

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My apologies for not posting lately. Things have been busy (work, home, kid's school) and I just haven't had the feeling that I had anything of any importance to say lately. I don't really have anything that important to say today, for that matter, but felt more like posting.

Overall, this has been a good year in school. So good for Buddy Boy that I haven't really talked about it, for fear of jinxing him. His second grade teacher is the best teacher in the school (at least that's what parents who have had kids in her class say, and I tend to agree). Mrs. J loves Buddy Boy, sees the positives, is great at motivating him, and is great at including him. Did I mention that he is included in the main gen ed classroom for the whole day, with the exception of some pull out time for OT? He has an aide, and has gone from less than half time in the gen ed classroom last year to full time this year. Buddy Boy has had a few rough spots, but his teacher took them in stride, never threatened that we "needed to do something about him", and kept pushing on, expecting him to succeed. And he has.

Buddy Boy still has problems completing his work in school, but his teacher allows for some modifications, and we complete some of it with him at home. He's doing fine academically, and really excels in spelling. He loves his class.

Sweet Pea is a bit of a pistol, but has settled in fairly well to Kindergarten. She firmly believes that the world revolves around her, that she is a true princess, and that she always deserves to be first, best, etc., etc. She is a social butterfly, and has a lot of friends. She also has some enemies at school (ironically, most seem to be girls amazingly like her, who also think that they are the best and only ones). But mostly she's done just fine.

I really shouldn't (and can't) complain. Especially when I read some other blogs, and see that some of my cyber acquaintances (I'd call y'all cyber friends, but you'd probably think I was a bit creepy) like Niksmom and Marla are going thru right now. I truly have nothing to complain about.

And yet I've been down a bit lately, because Buddy Boy has been struggling a bit more (getting into more arguments with his teacher at school, refusing to do homework, etc.) over the last few weeks. About 5 weeks ago he trashed our kitchen, including breaking up a wooden chair. It seemed to be an isolated incident at the time. I've asked him if he's unhappy in school, but he says he's not. I think he feels pressure, but he also desperately wants to stay in the gen ed room. This week has been especially bad at school (compared to how the rest of this year has been).

This week Buddy Boy's class has a student teacher (without the regular teacher in the room), and his aide has been out sick (and has not been replaced). They are covering the solar system in his class, and it is being presented as a "Space Adventure". The solar system is one of Buddy Boy's favorite things. He can name the planets (in order) tell me which ones are gas planets, was sad when Pluto lost its planetary designation, etc.

Whether it's been having the student teacher, not having his aide, or just one of those things, for the first three days this week he had to be removed from science class. As soon as the teacher started talking about the solar system he started interrupting, saying "It's not a space adventure!" He wouldn't (or couldn't) say what exactly he thought it should be, but something was truly upsetting about the way this was being presented, and he basically decompensated. When Buddy Boy decompensates, he gets less verbal, starts verbal ticks (grunts, clearing his throat, barking) and then starts getting physical (throwing things and/or tearing at his clothes). No one got hurt, and the school hasn't threatened to do anything, but it's been kind of disappointing. Once he was out of the classroom, he stayed out for the rest of the day. Things were going so good. We've tried talking to him about it the last few days, but he can't really say what's been setting him off, and each day has been pretty much the same. Liz called his teacher yesterday, and politely but firmly said that he absolutely needed to have an aide, as he was clearly having problems. His teacher agreed.

Today he got thru Science class! Maybe it was getting an aide back, maybe it was a fluke, or maybe he's accommodated to the changed teacher and unorthodox method of presenting the material. But for whatever reason, he made it thru today, which was good.

Meanwhile, down the hall in Kindergarten Sweet Pea was getting herself in a bit of trouble. Earlier this year the school called us because one of the parents complained that Sweet Pea was weaseling food from her daughter. Not exactly stealing it, but going up to this other girl and saying things like "That sure looks good. I sure would like some of that. Can I have some of your food?" This other girl didn't seem able to just say no, but always felt bad, and would go home and cry about this. The school also has a strict "No Food Sharing" rule, to prevent kids with allergies from getting the wrong food, as well as for general decorum. We talked about it when we found out, and thought she had stopped it.

Well last week we found out that Sweet Pea has been up to her old tricks again (and with the same girl). I guess she figures if there are no teachers directly around her at lunch time that she can get away with it. While I worry that my son will get bullied at school, his little sister is practicing her own bullying skills (this year treats from another's lunch, next year the lunch money?). So this time we've grounded her three favorite stuffed animals (all cats) and have threatened that if it happens again, her birthday party at the end of next month will be canceled. I'm hoping that will do it. But I fear that even if this battle is won, there will be many bigger ones with her in the future.

I'm crossing my fingers that Buddy Boy gets thru tomorrow OK, so he can finish the week on an up note, and that Sweet Pea doesn't forfeit the party. Because she has been planning this party since last year, and I know she's really looking forward to it.

Like I said, nothing earth shattering, or really all that interesting.

Springs coming, I know it is. And I can't wait for the clocks to change.

Facing Ignorance

How do you counter ignorance? Especially when that ignorance preys on the deepest fears of parents, and reels in parents with compelling anecdotes, pseudo science, and tales of government conspiracies?

Many parents, after getting a diagnosis of autism for their child, panic. They are confused, worried, and looking for direction. And rather than offer encouragement and hope for the future, many autism 'support groups', fueled by hope peddling purveyors of miraculous 'cures', tell these parents that their kids are autistic because of vaccines. That the government, doctors, and 'big pharma', all working together (both here and across the world) have all conspired together to suppress the fact that vaccines cause autism.

How do you counter the passionate beliefs of a number of parents that have bought into such nonsense, after spending thousands of dollars on supplements and possibly dangerous treatments, and who now see some 'improvement' in their children as they grow up and naturally mature?

With other parents.

Parents who have read the increasing number of dull and boring studies that show no linkage between vaccines and autism. Parents who finally say "Enough is enough", and come to see that there's no way the whole world is conspiring to keep them in the dark.

Years of dull, boring (but legitimate) scientific inquiry have not been enough to quiet the voices of the conspiracy mongers. So now the American Academy of Pediatrics (the AAP) is asking for parents to speak up and proclaim the truth. That even though we don't know all the things that cause autism, there is no linkage between vaccines and autism. That those who continue to support that argument are endangering public health. Whether it's measles outbreaks in Great Britain or San Diego, people's lives are being put at risk by the fear mongering that is causing people to reject vaccination.

The following is a letter from the AAP asking for parents to make themselves available for public comment. Please read the letter and consider offering your services. It may save a life.

Hello,

As part of our ongoing response to media stories regarding autism and
vaccines, the AAP communications department is compiling a list of
parents who support the AAP and are available for interviews. We are
looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support
immunization and who do not believe there is any link between their
child's vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This
could be a parent who declined immunization, whose child became ill
before a vaccine was available, or whose child was ineligible for
immunization.

We are asking for your help identifying parents who would be good
spokespersons. They do not need to be expert public speakers. They
just need to be open with their story and interested in speaking out
on the issue. We will contact candidates in advance to conduct
pre-interviews, to offer guidance on talking to reporters and to
obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and
contact information to select media. We hope to build a list of
parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue
is likely to recur in the national and local media. The AAP is
committed to doing all we can to counter such erroneous reports with
factual information supported by scientific evidence and AAP
recommendations.

The anti-vaccine groups often have emotional family stories on their
side. The ability to offer a reporter an interview with a similarly
compelling parent who is sympathetic to the AAP's goals is a powerful
tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Those who wish to make themselves available can contact Susan Stevens Martin directly at

ssmartin@aap.org .

It's time to stop wasting time and money chasing rainbows. It's time for right minded people to stand up and be counted.

Social Skills School of Hard Knocks

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Buddy Boy has some OT time at school, where he basically plays games with other kids, and he also goes once a week to a private class where a facilitator does much the same with a group of kids. Buddy Boy relates reasonably well with adults, but has never done especially well with other kids.

I've often pondered what were the reasons that Buddy Boy doesn't make friends, as well as the reasons that he is sometimes confrontational in encounters. It's not like he doesn't want friends. He laments at times that he doesn't have friends and isn't invited for sleepovers. From observing him at the park, I can say that he doesn't initiate encounters much with other kids, and doesn't respond much if other kids approach him. When I've tried making suggestions to him at the park, he says he doesn't want to play with the other kids, or that he doesn't want to do what they are doing.

I think that the efforts that the OT at school and the social skills class we take him to outside of school are worthwhile, but I also don't think that they are all of the solution. It's one thing to relate to other kids in highly controlled situations, and it's quite another in spontaneous encounters. So I actively supplement Buddy Boy's social skills education by taking him to parks during the summer, and fast food establishments with play areas all year long.

Paying for a 'Happy Meal' is less expensive than what we pay for each social skills class, and I think it's at least as productive. I talk to Buddy Boy ahead of time, reminding him of some of the rules (sharing, not being aggressive, taking turns) and then try to hang back somewhat and see what happens. If I sense a need I'll intervene, but mostly try to let him figure things out on his own. Buddy Boy, of course, thinks that it's all his idea to go to these places, as he's eating out and getting to go play. Which is just fine with me.

This last weekend we went to one of several fast food establishments that has a play area. It's one of my favorites because it also has free wi-fi, so I can catch up on postings on the Autism Hub while I keep an eye on the kids.

Most of the time went fairly well. There was a fairly good size group of kids there, and both Buddy Boy and Sweet Pea seemed to be getting along all right, though most of their play was of the 'parallel play' variety. I don't mind this, as there are always plenty of opportunities when there are several kids around for negotiations between different kids (who gets a turn on the video game next, who's turn is it now on the slide, etc.).

I was just getting ready to have the kids get their shoes back on and get ready to leave when I saw a female adult on the far side of the play area talking to Buddy Boy. I quickly sauntered over to see what was up. You know the walk-not wanting to run over and make a scene, but knowing that something isn't right and wanting to get over there and fix it.

As I approached, I saw a girl of about 4 years old next to the woman crying. Uh oh. The woman informs me that Buddy Boy (who was almost twice the little girl's size) had called the girl a bad name, and had stomped on her foot. I apologized to the woman, asked if her daughter was all right, and proceeded to tell Buddy Boy that he had just forfeited the 'toy' that came in his Happy Meal. This of course started him crying, which in one way made the situation worse, but in another helped us out. The mom started feeling sorry for Buddy Boy, telling me he was trying to protect his sister (Sweet Pea) and that her daughter was all right. I apologized again, quickly got the kids together, and made a hasty retreat out the door. I purposely didn't use the "He's autistic" excuse because I didn't want to further the falsehood that all autistics are violent, and I also didn't want Buddy Boy to get the idea that being autistic was an excuse for bad behavior.

In piecing the incident together with the kids in the car, Sweet Pea indeed had asked Buddy Boy to protect her (why Sweet Pea needed protection from a kid that was a bit smaller than her was unclear). Buddy Boy hasn't had problems with physical aggression at school this year, but often gets reprimanded at home for aggressive actions with us and Sweet Pea. I figure that this girl was similar enough to Sweet Pea's size that he naturally fell into his habitual way of dealing with conflict with Sweet Pea.

I guess we won't be going back to this establishment for a month or two. Luckily I have a few others that are in our rotation.

Even though moments like these are uncomfortable and a bit rocky, I think that necessary lessons are learned in such environments, and without the give and take of free play the lessons put forth in formal social skills classes never have a chance of being generalized.

Oh, and the bad name he had called the girl? 'Stupid white girl'. The mom had obviously processed this as a racial put down by Buddy Boy. While I'm sure that the 'stupid' part was a put down by him, I know that for him the 'white girl' part was just a descriptor, as he didn't know her name. I didn't stop to explain this to the mom, as I was happy to just make a quick exit.

Carbamazepine (Tegretol) and Asians warning

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I missed this when it first came out, but came across it this weekend and thought I'd pass it along.

Asians (including those from south Asia) may have a genetic variation that makes them susceptible to very serious (sometimes fatal) skin reactions called Stevens-Johnson syndrome and toxic epidermal necrolysis. If you are of Asian descent and your doctor recommends carbamazepine, genetic testing should be performed before you take this.

Information for Healthcare Professionals
Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, and generics)

FDA ALERT [12/12/2007]: Dangerous or even fatal skin reactions (Stevens Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy, are significantly more common in patients with a particular human leukocyte antigen (HLA) allele, HLA-B*1502. This allele occurs almost exclusively in patients with ancestry across broad areas of Asia, including South Asian Indians. Genetic tests for HLA-B*1502 are already available. Patients with ancestry from areas in which HLA-B*1502 is present should be screened for the HLA-B*1502 allele before starting treatment with carbamazepine. If they test positive, carbamazepine should not be started unless the expected benefit clearly outweighs the increased risk of serious skin reactions. Patients who have been taking carbamazepine for more than a few months without developing skin reactions are at low risk of these events ever developing from carbamazepine. This is true for patients of any ethnicity or genotype, including patients positive for HLA-B*1502. This new safety information will be reflected in updated product labeling.

This information reflects FDA's current analysis of data available to FDA concerning this drug. FDA intends to update this when additional information or analyses become available.

The full FDA alert can be found here.

Turning the Disability Tide

One of the complaints that I have often seen in regards to how autism is treated by society is that autism is approached from a medical oriented/disease based perspective, and not a social model.

In a recent JAMA (Journal of the American Medical Association, Vol. 299 No. 3, Jan. 23, 2008) journal there is a commentary written by Lisa Iezzoni, M.D. (Institute for Health Policy, Massachusetts General Hospital and Harvard Medical School, Boston) and Vicki Freedman, Ph.D. (Department of Health Systems and Policy, School of Public Health, University of Medicine and Dentistry of New Jersey, Newark). The article is entitled "Turning the Disability Tide: The Importance of Definitions". Unfortunately the entire article is only available online if you (or the institution you work for) has a subscription to JAMA. Requests for reprints can be made to the corresponding author, Dr. Iezzoni, at liezzoni@partners.org . JAMA can also be found at most public libraries.

Both Dr.'s Iezzoni and Freedman served on the Institute of Medicine's Committee on Disability in America, so one can presume (both from that affiliation as well as publication in JAMA) that their opinions are valued in the medical community on this subject.

The authors start with a brief overview of disability in America:

Forty million to 50 million individuals in the United States now live with potentially disabling conditions. According to the Institute of Medicine (IOM), this number will likely increase substantially in coming decades. Aging baby boomers will fuel much of this growth as this enormous cohort enters age ranges with the greatest disease and disability risks. Although rates of some serious limitations among elderly individuals have declined, sobering reports warn of higher rates of potentially impairing conditions among children and working-age adults. ...

...As have others, we argue that devising strategies to confront disability must first start by defining disability. Definitions implicitly connote goals, which in turn suggest potential solutions and targets for action. When it comes to preventing or deterring disability, this definition matters.

The authors then describe a brief history of disability definitions, detailing how by the early 1800's physicians had been designated as impartial arbiters of disability, and how increases in technology that allowed them to obtain objective data only solidified that role. Moving on, the article describes how:

Decades later, social changes upended medicalized notions of disability. Confluent forces, including the independent living movement, self-help initiatives, consumerism, deinstitutionalization, and civil rights campaigns for racial and ethnic minorities and women, catalyzed an incipient disability rights movement. By the 1970s, a new paradigm held that "problems lie not within the persons with disabilities but in the environment that fails to accommodate persons with disabilities and in the negative attitude of people without disabilities." Disability is "imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society." This new "social" model of disability diverged importantly from medical model tenets. "The social model . . . views the issue mainly as a socially created problem and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment." The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights.

Finally, the authors remark about the importance of the International Classification of Functioning, Disability and Health (ICF) which was published by the World Health Organization (WHO) initially in 1980, later revised in the 1990's, and unanimously approved by 190 member countries in 2001. The authors support the fact that the ICF integrates the medical and social models of disability.

Explicitly recognizing the role of external forces (physical, social, and attitudinal) in precipitating or mitigating disability represents one of the major contributions of the ICF. Equally noteworthy, the ICF introduced participation in daily and community life as an explicit component of health. This concept shifted the emphasis from strict prevention to maximizing functioning and well-being—perspectives consonant with public health goals in an aging society. By presenting disability as a continuum, the ICF emphasized the universality of disability and stressed its "relevan[ce] to the lives of all people to different degrees and at different times in their lives."

My opinion (as I've stated before) is that doctors, for the most part, are not the initiators of the oppression that the medical model places on those with disabilities. Rather, they reflect the predominant societal thinking at a particular time and place in history. This commentary, then, is important because it means that societal perceptions and goals are changing.

While I think it important that physicians lead when possible, I think that for the most part this commentary reflects an emerging trend within society, and not just the views of two isolated individuals. Getting definitions right will help society to fashion laws and policy that lead towards a more inclusive society. And that is something I can feel good about while I contemplate what the future holds for my autistic son.