Wonder who searched “explaining PDD-NOS to an idiot”

My blog is connected to Google Analytics, which lets me see all sorts of stats on who visits this blog. I like to look at “keywords” people use that lead to my blog. One term gave me a pause recently — On February 13, 2011 someone from Florida stumbled upon my blog after googling “explaining PDD-NOS to an idiot,” which is very curious because as of today, my blog doesn’t even come in the first five pages of results.

She (or he) browsed through several pages on the blog, but I don’t know if my ramblings were what she (he) expected. Too bad I have no idea of who it was, and whether that person found what she (or he) was looking for. I bet there’s a story behind it (isn’t there always?)

I wish employers DID realize the advantages of hiring mothers (parents)

Miranda Daniloff Mancusi’s 2004 Boston Globe article “For maximum efficiency, call on a mother” is brilliant. It’s not exactly fresh news, but I’d like to share it anyway. I came across it quite by accident; I was interviewing for a job where Miranda works, and as a good job seeker I googled every person with whom I was meeting.

I could relate to pretty much everything she wrote, and then some. In fact, the article reminds me a little bit of my introductory post on another blog I used to run for a networking group of employees of Harvard University who have children with special needs or disabilities. A shortened (and revised) version of that post was also published in Harvard’s newsletter for employees as an “opinion” piece titled “Support for staff with special needs children: a win-win for Harvard, families and scholars.”

(I’m afraid I still cringe when I read the phrase “special needs children” in the title. It was the editor’s decision, not mine. I prefer to say “children with special needs or disabilities,” but I guess the editor wanted a shorter title.)

Can everyone turn into a genius? (about Genius in All of Us, by David Shenk)

I must say up front that I have not read The Genius in All of Us: Why Everything You’ve Been Told About Genetics, Talent, and IQ Is Wrong, by David Shenk. I’m only writing about the Talk of the Nation NPR show “Not Too Late To Tap Into ‘Genius In All Of Us‘” discussing it.

I really liked the following statement:

“Having high expectations is always crucial. Another is that (and I do not envy the teacher in this) that the critical thing in a classroom of 20 kids or 30 kids or, God forbid, more than 30 kids is trying to find out the level of all these different kids and hit all of them just slightly above their level – not too far above, because that’s going to be discouraging to anyone, certainly not too far below because that’s going to feel really boring and be discouraging for a different reason, and also trying to find, in each of these distinct personalities, what gets them going.”

I wish David Shenk elaborated on the “discouraging for a different reason” piece, but overall he did say he does not talk much about education in his book. Too bad…

It is nice to tell the kids they all can be who they want to be and reach for the stars. I assume that this is what Genius in All of Us is saying.

But what about the kids who are very smart but whose passion for learning (and whose advanced synaptic connections) are killed by teachers forcing them to stay way below their level of ability?

Mindfulness-Based Stress Reduction Program

I mentioned research-supported findings about how stress affects physical health and well being in my last post “Worried about my telemers.” Since then, I have attended and completed an anxiety study at the Massachusetts General Hospital, and I’ve learned a few interesting things. It was an interesting experience as well.

The study (about which I learned from an ad on the subway) is titled “Stress Reduction Techniques and Anxiety: Therapeutic and Neuroendocrine Effects,” and it is sponsored by the National Institute of Health, and is conducted by the Center for Anxiety and Traumatic Stress Disorders at Massachusetts General Hospital. I believe they are still accepting “subjects.” As the Center’s website says, the study is “testing the effectiveness of two types of stress management courses for the treatment of Generalized Anxiety Disorder at the Center for Anxiety and Traumatic Stress Disorders.”

I was in the “meditation” class, and our teacher came from the University of Massachusetts Medical School Center for Mindfulness in Medicine, Health Care, and Society. Apparently, studies show that Mindfulness-Based Stress Reduction offers “reductions in medical and psychological symptoms across a wide range of medical diagnoses,” as UMass Medical Center’s page on research boasts, so now the MGH study is comparing the effects of MBSR to another stress management course.

Because we were “lab rats” so to speak, we did not have to pay tuition for the class, which normally is around $500 at the UMass Medical Center, although the center’s page does say: “Our goal is to the make the Stress Reduction Program available to those who can benefit without regard to ability to pay. Alternative payment options may be considered.”

Incidentally, my health insurance company, Harvard Pilgrim, offers a 15% discount off a mindfulness class at UMass Medical, but I also found that it offers a six-week class for only $150, which is a much better deal. Too bad Harvard Pilgrim offers it in only one location. Harvard Pilgrim’s site also has a page about mindfulness, together with free MP3 meditation downloads.

During the first class I asked our meditation teacher about the difference between the MBSR program and the programs at MGH’s Benson-Henry Institute for Mind Body Medicine. She said that there is an important difference, but I never got to hear what it is, because we were interrupted. I got to hear Dr. Benson speak once about his program, and it sounded fascinating. By the way, the Benson-Henry Institute is the only place in Massachusetts I found that offers a six-week stress management class specifically for parents of “behaviorally challenging children.”

Worried about my telemers

I had never heard about telemers until I watched “Stress: Portrait of a killer” on DVD.

Sure, I knew before that stress is not good for my physical health, after reading Minding the Body, Mending the Mind, by Joan Borysenko, but I had no idea that stress in a way damages our DNA (if I understand the process correctly). Yet that’s what Elizabeth Blackburn and Elissa Epel, two guest scientists on the show, were claiming.

Fascinated by their research, I looked for more information and what I found first freaked me out completely.

Apparently, chronic stress experienced by parents who have children with special needs or disabilities is very dangerous as it “may promote earlier onset of age-related diseases.” (Elissa S. Epel, Elizabeth H. Blackburn, Jue Lin, Firdaus S. Dhabhar, Nancy E. Adler, Jason D. Morrow, Richard M. Cawthon (2004) Proceedings of the National Academy of Sciences of the United States of America, Vol. 101, No. 49 (Dec. 7, 2004), pp. 17312-17315.)

But when I dug some more, there seems to be a glimmer of hope –further research seems to suggest that “comprehensive lifestyle changes” which include “moderate aerobic exercise […]; stress management[…], and a 1-h group support session once per week” were “significantly associated with increases in cellular telomerase activity and telomere maintenance capacity in human immune system cells.” (Dean Ornish, Jue Lin, Jennifer Daubenmier, Gerdi Weidner, Elissa Epel, Colleen Kemp, Mark Jesus M Magbanua, Ruth Marlin, Loren Yglecias,Peter R Carroll, Elizabeth H Blackburn (2008) Lancet Oncol 2008; 9: 1048–57.)

If I get it right then, I’m on a fast lane to developing age-related diseases, unless I exercise, meditate, and create a good support network for myself. I better get cracking!

Organizing electronic files

Turns out naming electronic files “vision” and “concerns” doesn’t work very well if you have two kids on IEP and they have a new IEP each year, especially if you want to keep the old files intact. Now I’m naming the files as follows “name-year-vision” or “name-year-concerns.” (example: “John-2010-vision”, or “Jane-2010-vision”). That should make it easier to find quickly the file I need. And, of course, these documents are in a folder called “IEP.”

My other child

Looking at all the back posts I noticed I have not really mentioned my other child — my daughter, who is about five years younger than my son. I was hoping, hoping so hard, she would be typical. But she isn’t…

I should have known better. Yet, her challenges are different than those of my son. She does carry the same diagnosis as my son — PDD-NOS, but she “presents” (as the psychiatrists like to say) very differently. She’s far more social than he ever was, she has good memory for faces and names, and she recognizes social connections pretty fast (she learned pretty fast who is whose mommy or daddy at daycare). On the other hand, she stimms (she lays down flat on her belly and twitches), she has a tendency to line up things, she can get upset when plans are changed, and she gets upset when her clothes get wet or dirty and when her hands get wet or sticky.

She also has been diagnosed with apraxia of speech, a condition I was wholly unfamiliar with, because my son’s language, despite initial delay, was pretty well developed by the time he was three. My daughter talks very haltingly, cannot pronounce certain syllables, and has a hard time repeating words, especially words that are longer than two syllables. She tries, she tries very hard, but it just is not coming out right. Her pronunciation is very hard to understand.

Is she twice exceptional as my son? I don’t know yet. I seem to have been discounting her intelligence because her “output” is so poor, but the other day she was playing “point to a shape” game and I was floored that at three she knows what a hexagon is, and sees the difference between a square and a rectangle. She does seem to have pretty good visual memory, like my son. She’s very good at card memory games and seems to remember events that happened a long time ago. So she might be smart… Yet, I worry that just as I still sometimes do, others will also discount her intelligence because she.. well… she just doesn’t sound very smart.

BPA and dental sealants

I had no idea there’s BPA in dental sealants!

That’s what a WBUR program reporting on a proposed ban of BPA in Massachusetts says (see “State Wants BPA Ban in Some Children’s Products,” May 12, 2010). Today, while sorting files, I found a brochure about dental sealants I was given when my son’s dentist recommended dental sealants — Seal Out Tooth Decay: A Booklet for Parents.

The first sentence reads “Sealants are thin, plastic coatings painted on the chewing surfaces of the back teeth.” So yes, dental sealants are plastic and apparently the kind of plastic that has BPA in it. But the brochure, of course, does not mention BPA.

www.bisphenol-a.org, a web site “sponsored by the Polycarbonate/BPA Global Group, which is organized regionally at the American Chemistry Council, PlasticsEurope, and the Japan Chemical Industry Association,” claims on a page “Resin Dental Sealants and Bisphenol A Oral Exposure” that “human exposure to BPA from dental resins is minimal and poses no known health risk.” But then the same web site also assures that “consumer products made with BPA are safe for their intended uses and pose no known risks to human health.”

Apparently, some sealants may be BPA free (according to www.non-toxickids.net post “BPA in Dental Sealants? Ask Your Dentist,” from January 1, 2009). But my son already has dental sealants on his teeth. Now I wonder whether it makes any sense (because, frankly, it is too late to do anything) to check whether his sealants have BPA in them.

Explaining Autism in 5 Minutes

I’ve just recently finished a graduate level communications class for which we had to present two 5-minute presentations. My first talk was about differences between the U.S. culture and other cultures in “smiling rates” and the understanding of when smiling is appropriate. I’ve decided to make my second speech about autism. The big stumbling block was time limit — how do you explain what autism is in less than five minutes? When I timed my first draft, it was 15 minutes long. I had to cut 2/3 of it!

I finally narrowed it down to what I thought the most important points were. Here it is, as I presented it, together with the slides. It’s hugely simplistic, I’m afraid.

Good evening.

You might remember my last presentation about foreigners who might behave differently than what you’re used to and expect.

Today I would like to talk to you about people who are a bit like foreigners in their own country.

 

 

Just a brief audience analysis – how many of you have heard the following terms: autism, Asperger’s Disorder? How many of you feel you could explain what these terms mean? (at that point only TWO out of fifteen people raised their hand)



 

 

Both Autistic Disorder and Asperger’s Disorder are part of so called Autism Spectrum Disorders or ASD, which also includes PDD-NOS – Pervasive Developmental Disorder – Not Otherwise Specified, also called atypical autism, which is the diagnosis that my eight-year-old received several years ago.


 

Autistic Disorder was described several decades ago, in 1943. Asperger’s Disorder was first described in 1944.

 

 

 

 

Asperger’s Disorder is also frequently called “Asperger Syndrome” (with or without apostrophe s), or simply AS. By the way, you might also hear people with Asperger referring to themselves as “Aspies.”

 

 

 

So both the Autistic Disorder and Asperger’s Disorder were described in 1940s – quite a while ago. But they weren’t recognized as a disorder until fairly recently. Only in 1994, just fifteen years ago, ASD was included in the DSM-IV, the fourth edition of the Diagnostic and Statistical Manual used by psychiatrists to diagnose mental illness.

 

 

Because autism is seen as a spectrum disorder, one person diagnosed with ASD (including PDD-NOS and Asperger’s) might be completely different than another. On one end of the spectrum you find have people who are severely affected – the might have no language and very limited or no ability to interact with others, at least not without the help of assistive technology. At the other end of the spectrum you might find people who have well developed language and average to superior intelligence.

 

So what is autism? It is a mental, developmental, or neurological disorder. Basically autism is a result of a different or atypical development of the brain.

To receive a diagnosis of autism a person needs to meet several diagnostic criteria. The full list is very long, but it boils down to three things: impairment in social interaction and communication, and repetitive and stereotyped patterns of behavior, interests, and activities.

Absent from the current diagnostic criteria are sensory issues that are quite common among people on the spectrum.

Let’s talk about social interaction first. People on the spectrum might have very limited eye contact, and as a result might be seen as shy, not interested, or hiding something. But for instance my son seems to be afraid of looking at eyes. He actually used to freak out when he saw a toy with abnormally large eyes.

People on the spectrum also have a hard time reading nonverbal clues — the tone of voice, facial expressions and body postures and gestures. Because of that might not realize, sometimes have no idea, when someone is insincere, or bored, or angry. That might lead to huge trouble in social situations. People on the spectrum are frequently laughed at and bullied, and also tricked or cheated.

The impairment in communication in people on the “light” end of the spectrum might manifest itself in their use and understanding of language. Aspies frequently do not understand the need for to “chit chat” or do “small talk” and are often not able to do that. On the other hand, they might have a tendency to go on and on and on about a topic that they passionately care about.

People on the spectrum also tend to be very direct and honest and often unintentionally appear rude because of that directness.

Also, their understanding of language, especially the semantics and pragmatics, is frequently impaired as well. They are frequently unable to read between the lines – understand the subtext, innuendo, or sarcasm.

All of the above issues can lead to huge problems with relationships. And it’s a myth that people on the autism spectrum don’t care about relationships. They do, but because autistic brains are simply wired differently, people on the autism spectrum have a really hard time figuring out how to make and keep friends and how to fit in, and do not understand why they are being excluded. They are expected “to be normal” – to take words from the title of a book. (By the way, Pretending to Be Normal: Living With Asperger’s Syndrome is a wonderful book. I highly recommend it for young adults (end of high school, college, and just out of college) as an “uplifting” story that things should get better in time)

But without specialized behavioral and communication skills instruction, people on the autism spectrum simply don’t know how to be “normal,” because autism is a neurological disability that prevents those affected from understanding the unwritten rules of social relationships, to use words from a title of another excellent book about autism. (The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism)

 

 

Thank you for listening. Any questions?

Baking bread and perfect life

My son was invited to a birthday party last week and I had a great conversation with other moms about our school district, about meds, about how we manage stress, and about lots of other things. It was very helpful for my emotional and mental well being to find out they are dealing with similar issues I am.

We were also talking about  blogs and blogging and I mentioned I this blog but said I haven’t written anything in ages. I was saying I don’t have the time, but then, it doesn’t really take that much time to write short posts, which is what blog post should be (short). And as the teacher in a “Writing and Editing for the Web” class I checked out (but didn’t take) was saying — you have to give yourself five to ten minutes to write it. Edit it once. And post it. You can’t agonize over everything you write. You have to learn how to write fast.

How does that relate to baking bread and perfect life? One of the moms apparently reads a blog written by a mom who has four kids and, if you believe the blog, she’s perfect and her life is perfect. (I’m afraid I do not remember the title of the blog.) The mom I spoke to sneeringly said that the blogger mom even “bakes bread every day.”

I found that interesting… If baking bread every day would make your life perfect, I should already have a perfect life. I do bake bread every day, but our life is … what it is. I only bake our own bread because organic bread without preservatives is expensive, and I don’t want to feed kids the “normal” bread full of stuff other than what should go in a bread — milk or water, flour, some sugar or honey, oil or butter, and yeast. By the way, my “bread bible” is Bread Machine Magic, Revised Edition: 138 Exciting Recipes Created Especially for Use in All Types of Bread Machines.