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.

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.

Tips for Creating a Networking Group for Parents of Children with Special Needs at Work

The reason it’s been very quiet on this blog is because I’ve been very busy elsewhere – I have been working on creating a networking group for parents of children with special needs at the place where I work.

I am happy to report I’ve made a good start!

When I posted a message on one of the newsgroups I belong to mentioning that I “managed to convince HR people at my workplace to help create a networking group for parents” I was contacted by Joan Celebi, Ed.M., CLC – a personal coach specializing in helping parents of children with special needs. You can read more about her at: http://www.specialneedsparentcoach.com/. She asked if I’d be willing to share how I managed to accomplish the creation of the group because one of her clients was trying to do that as well. It turned out she lives pretty close, so we met for lunch and I told her what I did.

Afterward I thought it would make a good blog post, and so did Joan. But it turned out creating a networking group is more time consuming than I expected, so I have not been able to get to it for a while. But here it is — I hope maybe others will be able to use this information as well.

Tips for Creating a Workplace Networking Group for Parents of Children with Special Needs – Part I – Do your prep work

The reason I wanted to create a networking group for parents of children with special needs at work is because I knew that at a place that employs over 16,000 people there’s got to be other parents like me and I wanted to meet them.

According to Massachusetts General Hospital’s Center for Child and Adolescent Health Policy, “In any given company nationwide, 8.6 percent of employees care for children with special needs.” (“Children with Special Needs and the Workplace: A Guide for Employers”, page 7, at http://massgeneral.org/children/professionals/ccahp/empl_benefit_study/pdf/EmployerGuide.pdf) So if you work for a company with 100 employees, statistically eight of them have children with special needs / disabilities.

Try to find other parents on your own

If you frequently interact with a lot of your co-workers, you can try to find some other parents on your own. Naturally, you can’t ask directly “You don’t happen to have a child with special needs, do you?” But if you pay attention you might see the clues…

Pay attention to parents who don’t say much about the child’s accomplishments in sports and hesitate what to answer when asked whether the family is busy on the weekends going to soccer, baseball, or hockey. That might mean (as in our case) that the kid is not good at team sports. It might be a physical disability, but it also might be autism or ADHD.

Pay attention to parents who never brag about their child’s grades and hesitate what to answer when asked how the child is doing in school. That might mean a child is not doing well, and might have a learning disability (recognized or not).

Pay attention to co-workers who do not attend company family picnics even though you know they have children. If a child has behavioral issues, autism, sensory issues, ADHD, or other neurological problems, big events like that are simply overstimulating and more torture than pleasure. Plus the parents may not want their co-workers to see their child in “one of those moods.”

Pay attention to co-workers whose preschoolers at the company picnic quietly dig holes in the dirt the entire time, not interacting with anyone, not even lifting up their head to say “Hi” when approached.

Pay attention to co-workers whose young children at the company picnic run around wildly not responding to their exasperated parent’s pleas to “stop and sit down quietly for a moment.”

When I see other parents embarrassed by their kids’ atypical behavior, I usually smile and say “That’s all right. My kid does (did) that too. He’s (very hyper / has social difficulties / is very clumsy). [shoulder shrug] I’m told it’s neurological.” That might give them enough information to open up and start talking.

If you find another parent with a child with special needs, or better yet a few parents, it will make it easier to make your case to create a networking group. Until the first workshop, I was wondering if I’m crazy and the whole thing is going to blow because nobody will show up. Eight months later, we have over forty people in the group and at each workshop there’s been at least one or two new people showing up.

Carefully examine your company’s HR structure

Small companies might have just one department doing all the hiring, benefits management, etc. If that’s the case, that’s where you need to go.

Larger companies might have a “hiring” unit separate from their “benefits” unit. Some will also have a “family and work integration” unit.

Look for a place that has the ability to contact all employees, preferably somehow connected to employee benefits, but it could also be the Internal Communication Office that sends out the Employee Newsletter.

At the place where I work there is a specific unit called “Office of Work / Life Resources” and that’s where I went. I found out who the manager / director is and requested a meeting.

Request a Meeting

Think carefully if you really want to do it. First of all, from that point on you’re going public with the information that you have a child with special needs. You have to be absolutely sure that you’re okay with that. Second, unless you’re a natural leader and a community organizer, organizing a bunch of individuals into a group will be very time consuming.

Here’s what I wrote to the director of the Office of Work / Life Resources. Feel free to use all or some of the language. I know it’s a bit lengthy, a shorter letter might be more effective. The goal is just to get a meeting. That’s when you’ll present your case in full.

Dear [name],

I am looking for help in creating at [company name] an employee-led support group for parents of children with special needs – children with physical and/or neurological disabilities who are receiving services and therapy from the Early Intervention programs or have an Individualized Education Plan (IEP) in school.

I apologize if you are not the right person to contact in this matter. If you happen to know the correct procedure for creating an employee-led support group, I would appreciate your advice.

According to the Massachusetts Department of Elementary and Secondary Education data, over 16% of students in K-12 are receiving special education services. That number does not include children who receive Early Intervention.

I do not know how many employees at our company have children, but even if only half of them do, then statistically nearly [number of employees x 0.5 x 16%] employees have children who receive special education services.

Having a child with a disability creates tremendous stress on the parent. Many parents feel overwhelmed and lonely while they’re trying to come to terms with the diagnosis and deal with a multitude of feelings including fear, shame, guilt, and despair, then look for more information about the condition and ways to help the child, try to learn about the special education law, medical insurance definitions, and spend quite a bit of time negotiating with the authorities (state, health insurance provider, or the school) to make sure the child receives necessary services.

A [company name] group for employees with children with special needs would offer these parents a chance to connect with others who are or have been going through the same process and dealing with similar issues, and would provide a forum for parents to share information, offer advice, and provide emotional support.

What’s more, the creation of such a group would not only contribute to the members’ well being, it will also result in a strengthened sense of being part of community and increased loyalty to the workplace where one can find understanding and support.

Please let me know what steps need to be taken to start this project – who needs to be involved, who needs to give permission, what procedures and rules need to be followed, etc. I am willing to do all the “legwork” but I do not know where to start. I’d be happy to meet with you at your convenience to discuss this matter.

sincerely,
[name]

If you don’t get a response right away, send a reminder in a week or two. If an e-mail reminder doesn’t work, try calling. If you get a voicemail and your phone call doesn’t get returned, stop by that person’s office and ask for an appointment.

What if they say “no” right away?

They might say “no” right away. They might say that in these difficult financial times and scarce resources it’s not possible to start a new project. Explain that you understand and that you are not asking to start a new program or benefits, you’re just looking for help in finding other parents who have a similar situation.

What if they say “yes”

If they say “yes” right away, that’s awesome! Maybe they have someone with a disability in their close or extended family and will be very supportive. You never know.

The next step will be “Part II – Present Your Case” but that’s a whole other blog post.

The IEP Process – Special Education Advice for Parents (Part I – The Beginning)

Learning about special education is a daunting journey. I’ve been doing it for over four years now and I’m still learning. I can barely remember the very beginning and how confusing it all was. That’s why when I read a call from Karen Nowicki (an integrative coach) for tips for parents with children on IEPs, I responded, even though it was tough to make my response so brief to meet the 100 words limit.

Karen was gathering responses for an article for Root & Sprout (a site I’ve never heard of until then) and has published her piece on IEPs just recently (update on December 3, 2009 – the site seems to have gone defunct since then).

When the article was posted, Karen wrote to me to let me know she received a lot of responses, and could not possibly include all of them, so I’m more than flattered that she did quote parts of my submission and included a link to this blog, even though I’m not anonymous any more. (I was planning to “go public” soon anyway, although I probably would not have published my name, just give the readers enough information that they would be able to find who I am.)

I’m also happy to be in the company of www.weddingsx3.blogspot.com, by Debbie Yost writing about mothering, family life & Down syndrome awareness; www.motheringautism.blogspot.com, by Pam Walsh, and on the same page that mentions www.wrightslaw.com, by Pete & Pam Wright, William & Mary Law School, Education Law Clinic & Special Ed Advocates, and www.LDpodcast.com, by Whitney Hoffman.

The first tip on how to prepare

Preparing for an IEP will require you to read everything made available to you by the school and everything else you can get your hands on to support your child’s rights to special services.

Is similar to what I wrote to her as well

Read, read, read – You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

The “Top Ten IEP Tips” from Carrie Gilmer and “Parent IEP Tips” from Eileen Mullin, are great too.

All that said, I tried to read this article as if I were a parent just starting out in this journey, and I’m afraid I probably would still not know what IEPs are all about and how to start the whole process, especially if my child was not in school yet and I did not know any staff from the district yet.

Most likely I would not understand the advice “Know and use IDEA 2004 laws and proper IEP procedure,” especially given the fact that the article does not explain what IDEA 2004 laws are. It is, of course, everyday language for parents of children with disabilities and in special education, but typical parents usually have never heard of IDEA (the Individuals with Disabilities Education Act), unless they work in Special Education themselves. And if they go searching for the term, they are most likely to get to the U.S. Department of Education web site, which is not very “beginning parent” friendly. (as I commented on in “IDEA (Individuals with Disabilities Education Act) U.S. Department of Education Web Site” from December 31, 2008)

The advice “Become an expert on your child’s disabilities” while extremely important, also assumes a parent knows what the child’s disability is. At the beginning of the journey, many parents may not even have a diagnosis yet and don’t know what to search for. In our case, the specialists disagreed on a diagnosis for quite a while. (as I complained in “Personal Introduction“ from September 2007)

So here comes:

Advice for Parents of Preschool-Age Children

When nearly four years ago my son’s private daycare teachers politely told us they won’t be able to “meet his needs” the following year when the number of children in the classroom was going from nine to fifteen and advised us to contact the local school district to see if he qualifies for special education services, I had to call a couple of places in the district before I found the right person to talk to. By the way, at that age “special education services” meant an “integrated” preschool with a comparatively low number of kids and a high number of teachers in the class, who can keep good tabs on everyone.

I know now that the place to start may not necessarily be called “Special Education Office.” In Massachusetts that’s usually called “Pupil Services.” If a district is large, the main office might refer a parent to a local school’s special education coordinator.

Whoever you talk to in that office will probably ask why you think your child should be evaluated and will ask for copies of any paperwork that would support that. They might ask for letters from the pediatrician and/or current teachers. It wouldn’t hurt if you wrote a letter too, listing all of your concerns, with examples. (I like to say things like “I am concerned about my son’s x y and z, because I have observed that …. Because of the concerns mentioned above, I am asking for ….”)

Starting the Binder

The day you first call the “Special Education” department at school is also when you should start a binder to document everything and where you start filing all paperwork, including the logs of phone calls.

I learned about the binder idea in a workshop “Getting Organized” presented to our local Special Education Parent Advisory Council by the Federation of Children with Special Needs. Until then I had been just simply keeping files in my file cabinet. But just about the same time I went to the workshop I found out I routinely ended up taking the files out of my file cabinet and lugging them to various appointments and meetings, where inevitably I was asked if these are originals or copies. I had to say “these are originals,” at which point they’d go and make copies, and sometimes, not often but it did happen once or twice, a page or two from the original would get lost.

Now I still keep the originals in the file cabinet, but as soon as I get any paperwork, I make at least three copies of the originals for the binder, one of which serves as the “pseudo-original” for copying, the other one is an extra copy I can just give out if necessary, and the third one is a “mark-up” copy where I write my comments.

I learned about the phone call log from what I consider one of the best books on special education — Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide, by Pam Wright and Pete Wright, founders of the Wrightslaw web site, which is packed with useful information. Until then it never occurred to me to create a written record of meetings and phone call conversations, but it’s a great idea, because couple months down the road you may not remember the day you called, who initiated the phone call, even if you remember who you talked to, the reason for the meeting or the call, and exactly what was discussed.

What I do now is a bit different than what the Wrights suggest — I write a follow up e-mail to the person I met with starting with “Thank you for taking the time to meet with me (talk to me) on (date) to discuss x, y, and z.” and including all the pertinent information about the conversation, especially if something was decided or agreed to during the conversation. I then print the e-mail and put it in the binder in the “Correspondence” section.

My son’s binder currently has the following sections, separated by labeled tab dividers (like the Avery(R) Write-On Tab Dividers With Erasable Laminated Tabs, 5-Tab, White):

  • Current grade work by date (the work he does at school that is being sent home)
  • Current year’s correspondence by date
  • Current year’s IEP
  • Current year’s progress reports, meeting notes, and data
  • Current year’s report cards
  • Last year’s correspondence by date (for the first couple of months of meetings in a given school year, after that I file it in an “archival” binder)
  • Last year’s IEP
  • Last year’s progress reports, meeting notes, and data
  • Last year’s report cards
  • Extra copies of documents (for photocopying, each in a separate plastic sleeve)

First meeting with the school (pre-IEP)

During the first meeting the school will probably hand you a lot of forms to sign consenting to various testing. The testing is supposed to assess the child “in all areas of suspected disability.” (IDEA Statue, Title I, B, 614, b, 3, B) The typical testing at preschool age usually includes

After all the testing is done, the school will (should) send the parents all results, with raw data and an explanation and recommendations for the future, and schedule a meeting to develop an IEP. At that point the school usually also asks (should ask) the parents to write a “Vision Statement” and “Parent or Student Concerns.”

The thing is – without knowing any information beyond the basic “Procedural Safeguards” and “Special Education Guides” that the school hands out, figuring out what to include in the “Vision Statement” and “Parent Concerns” might turn out to be a tricky homework. But that’s a huge topic, probably deserving a separate blog entry. I’ll try to get to it soon. (I’ve been very busy recently, hence the decline in the number of posts.) But I hope the above, nearly two-thousand word-overview somewhat covers the “What to Expect” part covering the very beginning of the process.

By the way, the tips I narrowed down to 100 words or fewer that I sent to Karen were as follows:

1. Don’t despair. Join a parent networking group if your district has one. In some states a Special Education Parent Advisory Council is mandated by law. It may be very active and working closely with the school administration or it may not. But it’s a great place to meet other parents who understand what you’re dealing with.

2. Read, read, read! You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.

I see networking and knowledge as crucial to the whole process. You need to learn about what you’re dealing with and since you’re not the first person starting on this daunting journey (even though it might feel like it at the beginning), connecting with other parents who’ve been doing it for a couple of years usually turns out to be very helpful for several reasons.

Following the Web from “organic foods” to “hyperbilirubinemia”

What does it tell you about eating “conventionally grown” foods if your own health insurance plan includes in its newsletter a short article about eating “organic”?

Harvard Pilgrim’s Winter 2009 mini-magazine includes a brief feature titled “Eating Organic on a Budget.” (see page 11)

Now, if you read the “fine” print (the paragraph titled “A Guided Tour of the Supermarket”), this feature seems to be just somewhat of an ad for one of the Harvard Pilgrim programs called “Supermarket Shopping” which

includes an aisle-by-aisle supermarket tour, led by a registered dietitian, that teaches you how to make informed decisions about the food you buy for yourself and your family.

Too bad they do it only on Cape Cod! I’m quite a long way from the Cape.

But the article also includes “Tips to avoid pesticides” and provides a link to a pdf of the “Shopper’s Guide to Pesticides in Produce” released by the Environmental Working Group. I especially like the page titled “Reducing Exposure is Smart” on the EWG site, which has a section “Tiny Doses Can Be Toxic to Children” and a list of references at the end.

I took a peek at Pesticides in the Diets of Infants and Children and what really got me interested was a quote that’s actually not related to pesticides or organic food at all.

Chapter 2, “Special Characteristics of Children” says

Because of the dependence of behavioral development on physical and functional development, toxic effects occurring before maturation may permanently alter behavioral development. The most commonly encountered and well-known toxicants that can permanently change all four of the components of behavioral development are bilirubin toxicity in the newborn and lead toxicity in the infant or young child. All four aspects of behavioral development are important in studies of developmental toxicology, but much more attention has been given to the first two because they are easier to measure.

The four aspects of behavioral development that they’re writing about are:

(a) gross motor and fine motor activities; (b) cognitive ability; (c) emotional development; and (d) social development.

And apparently:

Alteration in one of these domains can affect the development of each of the other three.

Interestingly, both of my children had neonatal hyperbilirubinemia, which was caused by our blood type incompatibility.

My son’s hyperbilirubinemia was severe enough that he had to get phototherapy. (if I remember right, when he was two days old his levels were at 17 or 18 mg per dL).

My daughter also had hyperbilirubinemia but didn’t receive phototherapy because supposedly her levels were never high enough to warrant that. I do not remember what they were and I do not have these records at home, and now I wonder, because her jaundice hung around for much longer. In fact, she is quite yellow in the pictures from the first days of her life.

Now, I knew that one of the effects of hyperbilirubinemia might be “mild mental retardation.” But if I understand the paragraph I cited correctly, hyperbilirubinemia might also influence the other aspects of “behavioral development” such as gross motor and fine motor activities; emotional development; and social development.

I wonder if anyone has done studies what percentage of people with autism and ADHD had neonatal hyperbilirubinemia as compared to “control group.”

Another thing to add to my “things to research” list…

Yopple eepee

We’ve been subjected to high-pitched chanting of “yopple eepee yopple eepee yopple eepee” for several days now and today during the 30-minute drive coming back from the auditory processing evaluation I finally found out what it’s all about.

Apparently one of my son’s classmates sounded out “people” as “pee-o-ple-ee.” That, repeated over and over again, of course sounds like “yopple eepee yopple eepee yopple eepee.”

One mystery solved. But we still don’t know why in the world he needs to repeat that over and over again, and especially in a chant-like very high pitched voice.

On the other hand, the auditory processing evaluation went fine. Meaning his auditory processing skills are at or above age level. So it’s not that he has trouble hearing, or understanding what is being said to him, even in an environment that makes it hard to listen. He can hear and comprehend speech just fine. He just … what? .. I guess he just “chooses” not to respond…

I’m think I’m just going to cancel all future appointments with the neurologist and other developmental pediatricians. The good thing insurance covers those things, but it is just beginning to look like a waste of time. Yes, his 20-minute EEG came out a bit unusual, but still it was not in the seizure range. I don’t think his staring into space while someone is taking to him has anything to do with seizures.

What’s the point of loosing half a day of work for me and half a day of school for him? It is not going to change anything.

If I sound frustrated, I am. I don’t even want to write anymore. And it’s not about “yopple eepee” or the auditory processing, but about something else entirely that he does that is so disgusting and gross that I’m too ashamed and upset to write about.

Antibiotics and increase in symptoms

My son got strep last week and is on antibiotics until the end of the week. Interestingly, I don’t know if it’s because of the antibiotics, lack of exercise and fresh air (it’s either snowing or too cold to go outside), boredom, or what, but we’ve seen some increase in symptoms recently — much more distractibility and fidgeting, some “strange” behavior (high pitched “chanting,” licking things, hanging off the sofa with head upside down). It’s like his brain is going haywire.

It has been a pattern in the past, when he was little, that whenever he was on antibiotics his hyperactivity would go through the roof. This time there are other things happening as well.

I wonder if it’s the red #40, or the antibiotics in general. Or something entirely else… I guess we’ll find out when we stop the medicine.

I’m curious whether anyone has done studies on the influence of antibiotics on the brain, if there are any subgroups of people for whom antibiotics changes their behavior. Or maybe it is the disappearance of the beneficial gut bacteria? I think I’ve read somewhere a theory that antibiotics may increase the severity of autistic behavior, but I don’t remember the explanation of why it would happen and who worked on that. I’ll have to try to look for it…

Engineers, Hips, and Autism

The headline “Men who don’t find curvy women attractive ‘could father children with autism‘” sounds just too weird to pass up. I found it through Google alert on a rather curious blog “What Sorts of People.”

The entry does not comment on the title, just refers people to an article in the Daily Mail Reporter, published on January 8, 2009, with the same title as the blog entry.

A different blog, Feminist Philosophers, also mentioning the article, quotes

“Studies show that the waist-to-hip ratio of 70 per cent is what the majority of men find most attractive because it correlates strongly with good health and fertility”

and questions the “because.”

Knowing how the media have the tendency to distort the conclusions of scientific studies to make them more sensational (see, for example, the entry “Parental psychiatric disorders and children with autism“ from May 9, 2008), I went first to the actual press release, which is titled “Who we find attractive could have implications for the prevalence of autism, say researchers.”

I must say I agree with the Feminist Philosophers poster’s surprise at making an assumption that who we find attractive is strictly correlated to who we actually marry (or with whom we have children), which is what the authors of the study seem to imply. (Otherwise, they should have gone straight for assessing “the actual dimensions of parents of children with autism.”)

But I wanted more, so I found the actual article, published in the Journal of Autism and Developmental Disorders (J Autism Dev Disord) published by Springer.

The article, written by Drs Mark Brosnan and Ian Walker, both from the Department of Psychology at the University of Bath, is titled “A Preliminary Investigation into the Potential Role of Waist Hip Ratio (WHR) Preference within the Assortative Mating Hypothesis of Autistic Spectrum Disorders,” and was published in the January 2009 issue of the journal.

It is dense and somewhat tough to understand to a not-even-close-to-being-a-psychology-dr like me, but once I read it a couple of times I actually found it fascinating, because of a few points the authors raise that are not mentioned either in the Daily Mail article, or in the press release.

If I understand it correctly (and I must say I’m not sure I do), the whole point starts with assuming that there is a connection between testosterone levels in mothers and the fact that

“ASD affects somewhere between four and nine times as many males as females.”

because

“ASD’s male predominance has led to suggestions that autistic traits might be influenced by prenatal androgens, as prenatal testosterone exposure has been found to correlate with abilities associated with the triad of impairments.”

Here the article refers to three scientific articles examining androgens, fetal testosterone levels, and autistic traits.

(I had to look up what “androgens” means. Apparently androgens “stimulate or control the development and maintenance of masculine characteristics,” and the “most well-known androgen is testosterone.”)

So what I think the article says is that high or higher than typical levels of testosterone in a woman’s body while she’s pregnant might be one of the factors that could cause autism.

The second point is that

“testosterone levels in women are visibly signaled by waist-to-hip ratio (WHR: waist circumference divided by hip circumference) because testosterone causes the accumulation of fat cells around the waist.” (The typical range apparently is around 0.7-0.8.)

The hypothesis is then framed as follows

“[I]f some men were found to show a preference for higher-than-average-WHR mates, this would encourage greater prenatal testosterone exposure for these men’s offspring. Critically, if this preference were seen more than average in men with a genetic predisposition towards having children with ASD, this would make the incidence of ASD higher in a population than we would otherwise expect. Their genetic predisposition to ASD could potentially interact with the maternal genetic predisposition (passed from mother to child).”

Now, no matter how you look at it, to me statements like “a man attracted to higher-than-average waist-to-hip ratio women is likely to have a higher-than-average prenatal testosterone exposure for their offspring” do assume that the man in question will actually have “offspring” with that “higher-than-average WHR ratio” woman that he’s attracted to. I don’t think that’s necessarily true, but let’s say it is.

So what I think the researchers are saying is that just because you are a “boxy” (higher than average WHR) woman does not mean you will have a child with autism. But if you have children with a man who has a “broader autistic phenotype,” then the chance that your child with have autism is higher than average.

And now comes the interesting part, not mentioned in the Daily Mail or the press release – the “broader autistic phenotype” is apparently tied (if not equal) to a man’s “higher systemizing skills.”

Drs Brosnan and Walker refer to studies from a couple of years ago showing that

“fathers of children with ASD have been found to be overly represented within Science/Engineering disciplines”

and that there is an

“evidence associating children with autisms’ familiar over-representation in highly systemizing activities (such as engineering or mathematics).”

In plain words – the way I understand it – autism spectrum seems to run in families of engineers and other mathematically oriented professions.

(The article does not mention computer programmers or coders but I bet they are part of the group as well. I actually would expand it to include most academics overall; I’ve been working with academics for nearly fifteen years, I’ve seen some interesting “phenotypes” quite worthy of extended studies.)

That reminds me of the comment my son’s neuropsychologist made when I responded “it’s not the end of the world” when she confirmed the diagnosis of PDD-NOS – She said “Of course not! Just go and take a walk around the MIT campus!” (see the “Yes, it is PDD-NOS after all!” entry on May 2, 2008)

Laughing out loud, the Massachusetts Institute of Technology is probably one of the best places in the world to find a guy with “highly systemizing skills.” By the way, I went once to a ballroom dance class at MIT – it’s heaven for girls, they get to dance all the time, and it’s the guys who have to wait for a turn! (And no, it’s not where I met my husband, but he is good at systemizing. And no, I will not publicize my WHR.)

So again, a “boxy” woman will not necessarily have a child with autism just because she’s less curvy, and a scientist will not necessarily have a child with autism because he’s good at math, but if the two have children, then the chance that their first born male child will have autism is greater than average, especially if the guy was not a first-born himself.

(Oh, yeah – here are a couple more interesting nuggets not mentioned in the press release or the article – Apparently “engineers have relatively more sons than daughters.” Also, “the risk of ASD is higher in first-borns.” And there also seems to be a pattern “of children with ASD being firstborns to fathers who were not firstborn themselves.”)

What about “boxy” women who are scientists marrying their fellow scientist colleagues? I’m sure someone will study that soon (if they haven’t already).

And what I’d like to know is whether all women in the photographs used in the study, those with average WHR and those with higher than average, were equally well endowed in the “bosom department.” Yeah, I know guys look at the “WHR” but I think those measurements also play a big role (otherwise there wouldn’t be such a big market for implants). Although naturally big err.. cup size, probably has something to do with testosterone and estrogen levels as well, so in the end it probably doesn’t matter.

Why are white lies considered “politeness”?

I’ve lived in this country for nearly twenty years but I still can’t figure out why Americans consider as polite inserting little white lies pretending they care into conversations with people they really don’t give a damn about.

I’m talking about saying things like “We really have to keep in touch” to a coworker moving to another job you’ll be happy never to see again or adding “Maybe some other time” when you decline an invitation to an outing simply because you don’t like that person.

The February 2009 issue of hugely popular Parents magazine  includes an article “Your Complete Guide to Playdates” by Mary Jo DiLonardo which includes a “Q&A” Playdating Dilemmas. One of the questions was:

“That kid was a brat, and I don’t want him to come back. What should I do?”

The suggested answer? You guessed it:

“Our schedule is crazy at the moment. Can we touch base at a later date?”

with a comment

“If you say that enough, all but the most socially inept person will get the message.”

What really surprised me is that these answers were provided by Melissa Leonard, a certified etiquette consultant in Harrison, New York.

It just so happens that one of my son’s classmates asked to come over to our house for a playdate, so I contacted his parents to arrange that. The answer I got was “We are fully booked for both Saturday and Sunday. Maybe we can find another day in the future.”

Mind you, she didn’t say “Gosh, I’m sorry. We can’t do it this weekend. How about in two (three) weeks?” or something along those lines showing she does want to arrange a playdate in the future. So… In the context of Melissa’s advice I should take that answer as “No way I’m sending my kid to play with yours,” and that really sickens me.

What in the world compels Americans to pretend they are friendly if they really don’t care?

Honestly.. If you cannot stomach telling me “I’m sorry, but I think your child’s exuberance just is just too much for my son and hypers him up” then all right, do say “We are fully booked.” I’m okay with that. But do not add “Maybe we can find another day in the future,” when you don’t mean it. It might be the accepted convention, but to me that is not only disingenuous and insincere but just plan insulting. And disgusting.

What am I supposed to answer to that? “Whatever” would of course be my first reaction, but that would be rude. I could also answer along the lines of that  style and write back “I’m sorry to hear you are busy. I hope we can try some other time.” And leave it at that. But frankly, I don’t really feel like answering at all. And I don’t care what that mother or Melissa Leonard think about me. I refuse to play that game.

I’m just sorry for my son and that kid, because he really sounded like he wanted to come over to our house for a playdate.