No Autistics Allowed? (the story of Alex Barton)

Everyone has already heard this unbelievable story – a teacher in a kindergarten classroom “led” her pupils “to vote […] out of class” a five-year-old being evaluated for Asperger Syndrome.

The first coverage of this story (or one of the first) appeared on TCPalm.com (May 23, 2008 “St. Lucie teacher has students vote on whether 5-year-old can stay in class” by Colleen Wixon).

As the newspaper reports “each classmate was allowed to say what they didn’t like about […] Alex” and “by a 14 to 2 margin, the class voted him out of the class.” Alex’s classmates said that he was “disgusting” and “annoying.” “The teacher then allegedly asked the boy where he would go now that the class doesn’t like him the boy replied, ‘to the office?’ the teacher returned with ‘they do not want you there’ then the 5 year old said ‘home’ the teacher said your mom is at work you can’t go home. He finally said that he would go to the nurse and the teacher sent him out of the classroom to the office where he stayed for the remainder of the day.” (treasurecoast.com, Friday, May 23 “Austistic 5 year old allegedly physically, mentally abused by Port St. Lucie School Teacher”)

Melissa Barton, Alex’s mom was interviewed by CBS and the “raw video” of this thirteen-minute interview is available online.

Wendy Portillo, Alex’s Teacher, has been “reassigned” to another position while the school board is investigating the incident to decide what to do next. She has not commented on the incident to the media, per the advice or order of the school officials, as I understand.

TCPalm.com has a page with links to all articles on their site covering this story, including editorials, some in defense of Wendy Portillo.

The May 29, 2008 article “Police report reveals teacher’s side of incident in which boy ‘voted’ out of Port St. Lucie class”, by Coleen Wixon has a link to a pdf file of the narrative portion of the police incident report which so far is the only place where one can read Wendy Portillo’s side of the story.

What surprised me from this report is that she filled out a discipline referral for Alex for “pushing up the table with his feet.” His classmates’ work was sliding off the table as a result, and for that he was sent to the principal’s office.

I am also floored by Portillo’s statements in her testimony that “the students in class were all her priority and she would protect them like ‘a bear defending her cubs’” that “she would not let them hurt anyone and she would not let anyone hurt them.” It is quite obvious she did not consider Alex as one of the cubs. I bet Alex will remember for the rest of his life the way she hurt him and humiliated him in front of his classmates. (Just as I still remember my second grade math teacher hitting me and my classmates on the palm with a ruler, or my first grade PE teacher calling me antisocial in front of the whole class, and that was a really long time ago.)

Portillo also claimed “she felt if [Alex] heard from his classmates how his behavior affected them that it would make a bigger difference to him, rather than just hearing it from adults.” That’s why she “polled the class to see how [Alex’s] peers felt about his return.” And that comes from a teacher who supposedly is trained and certified to teach special needs children.

I don’t know who trained Wendy Portillo in teaching special needs children and what special needs were covered in her training but she sure doesn’t know squat about autism.

I am shocked that discrimination like this comes from a person who is a minority and I’m pretty sure has been discriminated against herself and should know what it feels like to be criticized for just being who you are and for something you have no control over.

Alex’s classmates telling him what they don’t like about his behavior will not change his behavior because he has no control over it, just as she has no control over the color of her skin. How would she feel like if her peers told her they don’t want her as part of the teaching faculty because of her race? I’m sure she’d be outraged, as she well should be. Luckily, even though there’s still plenty of “below the surface” racial discrimination in this country (which people feel very uncomfortable talking or writing about) such open racial discrimination is illegal in the U.S.

Unfortunately, it seems there’s still a long way to go to combat the legal discrimination on the basis of a neuropsychological disability. I’m sure it would not even occur to Portillo (or at least she would not dare) to put a minority child or a child in a wheelchair or an overweight one through a “vote” like this.

I also could not believe some of the comments left by readers in response to the news reports about Alex. And as much as I’d like to think that the comments against Alex and supporting Portillo and the exclusion of children on IEPs from regular classrooms were written by “trolls” – people who post inflammatory remarks just to stir up people and make them angry – I’m afraid that a lot of those comments truly are what people who wrote them think and believe and that’s what they teach their children.

One of Alex’s classmates, Jessica Moore, cried when Mrs. Portillo was removed from the classroom. She was among those who voted Alex out of the classroom and sees the incident as a “non-event.” Her father, Terrence Moore, of course doesn’t see anything wrong with that picture and calls Portillo a “very caring teacher.” (TCPalm.com, May 29, 2008 “Police report reveals teacher’s side of incident in which boy ‘voted’ out of Port St. Lucie class”)

I am terrified to think whether any of parents of my son’s classmates would want him removed from the classroom. Some of the behaviors that made Alex’s peers vote against him were humming or eating paper. My son doesn’t hum or eat odd things anymore, at least not in school, but he used to. He stopped doing that because he received a lot of accommodations and behavioral interventions at his integrated preschool. If he had a teacher like Wendy Portillo, I’m sure he’d be voted out sooner or later as well.

Everyone who has or worked with an autistic child knows that even with the high functioning kids the symptoms are quite noticeable right away. I’m floored by the fact that Alex has been in school since September and for the past nine months the school has done nothing to help him when it is widely documented that for autistic children intervention and support at this age is crucial and can make a lot of positive difference in the future.

There has been tremendous coverage of Alex’s story on blogosphere. I especially like the post “Wendy Portillo’s Psychological Mob Lynching of a 5 Year Old” on Thinking in Metaphors (I like too many parts of this post to quote it, I’d have to quote the whole thing)

and “Alex Barton” on Life with Joey where the author writes

“Not only was Alex Barton emotionally abused, but so was his entire class. […]This was an assault on an entire classroom of children, with Alex Barton as the focus.” (the entry also includes links to other blogs discussing Alex’s story)

Another blogger on MOM – Not Otherwise Specified (I love the title!) makes a very good point for inclusive education in her post “The tribe has spoken”

“In the midst of a difficult, troubling year, Alex Barton’s teacher called his village together and rallied them against him. Bud {the blogger’s son} also had a difficult, troubling year and, interestingly, his teacher also called his village together for a tribal meeting. Unlike Alex, Bud was not there for the meeting. And the agenda for Bud’s tribe’s meeting was distinctly different: one of the special ed team members came in to talk to Bud’s class and help them understand Bud a little better – help them understand the things that are difficult for him, the things that are easy for him, and the things they could do to support him through the challenging times. Like Alex’s village, Bud’s village came together. But Bud was embraced instead of exiled.”

And finally, I found very interesting the entry “Why I am closing the comments on two posts” on Asperger Square 8, where the author writes

“Around the web, you can find comments stating that she did the right thing, that children must be made to behave through any means available. You will also find people saying she should be harmed emotionally and/or physically for her crime. I’ve heard that she is undeserving of life. This is not acceptable to me. […] I know that if my worst moments were shown to the world, were discussed on numerous sites, some with nearly a thousand comments now, I would not want to continue living. Yet I believe in redemption (not in a passive sense, but through hard work toward change) and I hope that others, including Portillo, do too.
When people start coming to my blog and talking about revenge and sending people to hell, it is time to take a break. […] For the sake of the other Alexes, those whose names are not in the spotlight, it is time to turn our attention toward the larger societal problems, those which allow bullying to occur, not just in one school in Florida, but throughout this nation.”

I agree – even though I’m afraid the war on discrimination will never be won completely, we cannot stop trying. That’s why I’m planning to request putting in my son’s IEP “educating the school staff about autism and ADHD and the types of accommodations and interventions required” – a suggestion I picked from A Parent’s Guide to Special Education: Insider Advice on How to Navigate the System and Help Your Child Succeed, by Linda Wilmhurst and Alan W. Brue, published by AMACOM in 2005.

Parental psychiatric disorders and children with autism

The May 5, 2008 issue of Pediatrics published an article “Parental psychiatric disorders associated with autism spectrum disorders in the offspring,” written by the UNC research team, led by Julie Daniels, PhD, assistant professor in the departments of epidemiology and maternal and child health at UNC’s School of Public Health.

As I understand, the team reviewed birth and hospital records from Sweden and looked at the numbers of psychiatric disorders in parents and the numbers of autism in children. And yes, there seems to be a link between the two.

But what I found interesting is how this news is reported, beginning with headlines to the way the results are described in the news about this study.

Take, for instance the following headlines:

Don they make it sound like the child’s autism is the cause of parent’s mental illness? In other words, if you have an autistic child, there’s a high chance you’ll develop a mental illness as a result, which is not what the study is saying, I believe.

Some headlines’ language is more neutral:

But simply because they put “autism” in the first part of the headline I still think someone could understand these headlines as pointing to autism as the cause of parents’ mental illness.

I found just a couple of headlines that put the “parents’ mental illness” language at the beginning (just like the article to which they are referring):

In other words, the way I would understand these headlines without reading the article underneath, the parents’ mental illness is related to a child’s autism, but without reading more, I wouldn’t know in what way – which one causes the other.

And finally, I found it quite amusing that the Russian Pravda’s headline “Parents with mental disorders more likely to have autistic children” is pretty much the opposite of the Washington Post’s headline.

Pravda‘s headline, by the way, as blunt and to the point as it is, does seem to get the gist of what the researchers are saying, but I’ll have to look at the actual article to confirm.

Nonverbal autistic teenagers “speak out”

Amanda Baggs (see the entry “Non-verbal Autism and Intelligence – some myths debunked”) is not the only nonverbal autistic person who communicates through a computer.

More than a year ago, in March 2007, PBS Boston station, WBUR broadcast a program about about Portia Iverson, an Emmy-winning Hollywood art director and the author of Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism, and her son Dov who was diagnosed as severely autistic when he was 18 months.

After the Iversons learned how Soma Mukhopadhyay from Bangalore, India has taught her autistic son Tito to communicate through a board with alphabet and numerals written on it, they have invited Mukhopadhyay and Tito to the United States, and Mukhopadhyay has taught the Prompting Method to Dov as well.

Mukhopadhyay is now the Executive Director of HALO (Helping Autism Through Learning and Outreach) – a non-profit organization located in Austin, Texas where she provides 1:1 educational instructional sessions for students with autism and similar disorders.

Iverson, who co-founded the Cure Autism Now Foundation (now Autism Speaks), also runs a web site www.strangeson.com which discusses not only the book but, among other things, the pointing method as well.

A couple of months ago, in February 2008, ABC News showed a story about Carly Fleishman, a thirteen-year-old who has begun to type on the family computer. (You can see the footage if you click on the “play” button in the picture of Carly.)

As I understand, there’s a disagreement whether both Amanda Baggs and these stories are a hoax, and some people cannot believe that a nonverbal autistic person can communicate, make videos, write poetry, or even just be able to type full sentences. You can see some negative opinions like that in the “Comments” to the entry “Your Opinion Requested: Are Non-Verbal People with Autism Intellectually Capable?” on the Autism Blog by Lisa Jo Rudy.

What is the truth? I do not know.

But just think about Stephen Hawking. He cannot talk, he can communicate only through an adaptive device, yet nobody would deny he’s a genius.

Is it really so hard to believe that autistic people who cannot talk are more aware of their surroundings than they can show?

Yes, it is PDD-NOS after all!

We finally got the neuropsych (neuropsychological testing) results and it is PDD-NOS after all! (See the entry “Autism 101: A basic definition” for more on PDD-NOS.) That may sound like I’m happy and someone might be thinking “Has she gone crazy?” but it’s good to finally have one doctor agree with another (see the first entry “Personal Introduction” about our history of testing and diagnosis. And as far as PDD-NOS goes — we knew it’s a high possibility. It is not the end of the world.

In fact, when I made the same remark in the doctor’s office, she emphatically said “Of course not! Just go and take a walk around the MIT campus!” Laughing out loud, but she’s right, and not just regarding the MIT. I suspect a lot of academics, especially the spacey, absent-minded type ones, have some undiagnosed conditions. I work with academics, so I’ve seen these types often enough to wonder about that myself sometimes.

The doctors haven’t recommended many changes to his IEP, they said they were quite impressed with it being so detailed and with the whole “team” at our son’s school. That was good and comforting to hear.

But they did give us a list of books “helpful in explaining and guiding [...] in fostering play.” We’re supposed to encourage him to “just be a kid.” We’ll try…

Oh, and he may have “challenges with higher-order processes such as executive functions.” (No kidding. We have problems with it too.) So we got a title of a book about executive skills as well.

Looks like I have the reading list all cut out for the next several months. (I’ve also been planning to read all the books mentioned in the “Unwrapping the Gift of ADD” series, and there were quite a few of those.)

There’ll be plenty of material for blogging.

Non-verbal Autism and Intelligence – some myths debunked

The idea that non-verbal autistics have low IQ in general and are unaware of their surroundings is a myth that has to be debunked.

Consider Amanda Baggs, featured in the article “The Truth About Autism: Scientists Reconsider What They Think They Know” by David Wolman in the March 2008 issue of Wired Magazine.

The 27-year-old Amanda Baggs is autistic and “non-verbal” – she cannot speak, but that does not mean she does not communicate. If it wasn’t for technology, nobody would know what she’s thinking, how she’s feeling, and, quite frankly, that she’s a pretty amazing person. Luckily, she can communicate through the DynaVox VMax computer and through her very powerful YouTube videos and her blog Ballastexistenz, has become an advocate for human rights for the disabled and for the acceptance of people like her.

(As a sidenote, I have linked to the “About” page on Amanda Baggs’ blog because that’s where she explains the title of the blog and refers to the “German eugenics movement against disabled people — which, for reference, predated Nazism” and “was heavily influenced by American ideas.” By the way, Stephen Murdoch, the author of IQ: A Smart History of a Failed Idea also wrote about the eugenics movement in his book.)

Baggs’s “In My Language” video, “is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.” I hope you’ll watch it.

David Wolman’s piece also mentions an article by Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron, titled “The Level and Nature of Autistic Intelligence” published in the August 2007 issue of the Psychological Science, a journal of the Association for Psychological Science, published by Blackwell Publishing.

You can’t see the full text of the article unless you are a member of the Association for Psychological Science or have a subscription to the journal, but you can see the abstract.

The first author of the article, Michelle Dawson, is autistic as well. In her blog entry about the article being accepted for publication she writes “there should be a lot more caution than is currently the case, when making assumptions about what autistics can or can’t do. Some serious rethinking is necessary, about intelligence in autism and possibly intelligence in general.”

Current APS President, Morton Ann Gernsbacher, the Vilas Research Professor and Sir Frederic C. Bartlett Professor of Psychology at the University of Wisconsin-Madison, and a co-author of “The Level and Nature of Autistic Intelligence” wrote for the April 2007 issue of the Observer (also published by the APS) an article titled “The True Meaning of Research Participation” which is worth reading as well.

Beyond the Wall, by Stephen Shore

I already mentioned Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, by Stephen Shore, published by the Autism Asperger Publishing Company (AAPC), in the post “Understanding Autism (for Dummies, by Stephen Shore)” but I’d like to add a few words about it.

It’s an autobiography and while someone might think that writing an autobiography is an exercise in vanity, what makes this autobiography so interesting is reading about growing up and life in general from a point of view of a person with autism.

Overall, Beyond the Wall, game me a lot of “Oh, that’s why..” moments. Stephen Shore remembers (and writes about) events that happened when he was very young and pretty much non-verbal. He explains how he could not explain to his parents that the reason he hated haircuts was because he could feel each single hair being pulled and that it hurt. He also recalled how trips to a grocery store used to cause sensory overload because of the overpowering mixture of smells in the produce section and the flickering of lights overhead. After reading that I finally understood my son’s behavior whenever we go shopping – the sensory overload may be just too overwhelming for him and that’s why he goes “wild”.

The parts about living with autism as an adult are quite fascinating too and point out how some things that most people overlook might be overwhelming to people with sensory differences – such as (but not only) the ticking of the clock at night, the singing birds in the morning, or the smell of people on public transportation. (Personally, the ticking of the clock at night used to drive me nuts so much I got a digital clock which doesn’t bother me, as long as I turn the clock so that the green numbers “shine” in another direction and not in my eyes.)

Check it out, I hope you’ll find this book interesting and learn something new as well.

Autism 101: A basic definition

What is autism? The Autism Society of America, “the nation’s leading grassroots autism organization,” founded in 1965, says on their introductory web page that “Autism is a complex developmental disability that […] affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a ‘spectrum disorder’ that affects individuals differently and to varying degrees.”

The term “spectrum disorder” is very important here, because the severity of the disability varies from person to person.

Stephen Shore, mentioned in my post “Understanding Autism (for Dummies, by Stephen Shore),” posted on his web site the “autism spectrum wedge” – a diagram of the autism spectrum severity created by Dr. Dan Rosenn, MD. (scroll down the page to the second graph to see it)

On the left are individuals whose autism is severe and debilitating – they are not only non-verbal, they may be unable to show to the “outside” world what they think, how they feel, or what they want or don’t want. It may look like they are completely unaware of what’s happening around them, they seem to be in their own world. (In reality, we now know they are aware of their surroundings, but that’s a topic for another post)

Stephen Shore places himself as a non-verbal four-year-old in the middle of the wedge – true, he was non-verbal, but despite not being able to talk, he was able to interact with his mother. The different shapes in the wedge are supposed to represent a variation in autistic characteristics – there is more variety among individuals with moderate autism in how they behave and which functions are impaired.

On the right side of the wedge are people with the so called “HFA – highly functioning autism” or “AS – the Asperger Syndrome.” At this point on the spectrum, the variation among people is the largest and each person’s autism might manifest itself in a completely different manner.

So what do they all have in common?

You can go to the Centers for Disease Control and Prevention section “Autism Information Center” to see the full definition for each disorder.

But in short, according to the Diagnostic and Statistical Manual (DSM), fourth edition, published by the American Psychiatric Association in 1994, 299.00 – Autistic Disorder—is characterized by:

1) qualitative impairment in social interaction

2) qualitative impairments in communication, and

3) restricted, repetitive and stereotyped patterns of behavior, interest, and activities.

The DSM makes a distinction between 299.00 and Asperger’s Disorder, which shares the code 299.80 with Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism). But only the requirement for “qualitative impairments in communication” is missing from the definition for 299.80.

The common part is the “impairment in social interaction” and the “restricted, repetitive and stereotyped patterns of behavior, interest, and activities.”

By the way, the definition for the Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism), or PDD-NOS for short, does not have a specific list of criteria. It just states:

“This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism – presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.”

The most important word in this definition is “or.” To get a diagnosis of PDD-NOS not all three areas (social, communication, and behavior) from the autism diagnosis have to be impaired; it could be just one. So a child could get a diagnosis of PDD-NOS even if he or she was not exhibiting “restricted, repetitive and stereotyped patterns of behavior, interest, and activities”— the requirement for both the Autistic Disorder and the Asperger’s Disorder diagnosis.

That’s why one of the specialists that saw our son made a diagnosis of PDD-NOS, because his “peer relationships” were not “appropriate to developmental level,” his “ability to initiate or sustain a conversation with others” was also impaired, and he was exhibiting “lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.”

Understanding Autism (for Dummies, by Stephen Shore)

The title of this post is taken from the title of a book about autism – Understanding Autism For Dummies, by Stephen M. Shore, Ed.D., and Linda G. Rastelli, MA, published by John Wiley & Sons, Inc. in September 2006.

Our regional Special Education Parent Advisory Council (SEPAC) recently had the pleasure of meeting Stephen Shore and listen to him talk when he agreed to participate in a workshop on autism we organized for the Autism Awareness Month.

Stephen Shore, currently in his forties, was diagnosed with autism when he was a child and was non-verbal until he was four. His parents were advised to institutionalize him, but didn’t do it. Instead, his mother “worked” with him until he was ready to be admitted to school. That was the sixties, before “Early Intervention” and any other mandated support for disabled children existed. Now Stephen Shore has a doctoral degree in education, is a very-well recognized speaker on autism, and in addition to Understanding Autism For Dummies, is the author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (Second Edition), and editor of Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum.

If you ever get a chance to see Stephen Shore talk, go. You won’t regret it – he’s a very engaging speaker. You can get a feeling of what he’s like from the clips he posted to his web site, in the “In the News” section.

What I liked about Understanding Autism For Dummies is that although it starts with the basics, it is not just any old introductory book to autism. I actually bought the book for myself, for future reference, after reading a copy I got from the library. Even the introductory section, titled “Understanding Autism” has a wealth of information – it covers the current diagnosis, talks about the spectrum, the present understanding of the causes, and brief discussion of available interventions, all in a plain, simple to understand language.

On the publisher’s web site you can see part of the first chapter and the complete table of contents in pdf.

In closing, I just want to quote here briefly the beginning of the section titled “Living with Autism as an Adult.”

“Adults with autism often get less attention than children with autism. We believe this needs to change, […], and we’re not the only ones. Adults with autism and Asperger’s need help choosing careers, navigating the complexities of higher education, and understanding social relationships.”

Personal Introduction

My son is twice exceptional — he is both academically gifted and special needs, or the other way around, depending on how you look at it.

There are times when I’m amazed at his intellectual abilities. Even since he was little, he could always figure out very fast how toys are operated and what he has to do to make it move. When he was two he could do quite complicated puzzles, the type for preschoolers. His daycare teachers were borrowing games from the preschool class especially for him. I also noticed he had an amazing memory and could remember events and places for a long time afterward.

Now, at nearly six, he can read fluently, is pretty good at math, knows all the planets in the solar system, etc, etc. Some of his favorite TV shows are the typical stuff that smart, geeky kids like: the PBS shows Cyberchase, Fetch!, Super Why, and Curious George; the Discovery Kids shows Popular Mechanics for Kids and Crash! Bang! Splat!, and Magic School Bus. But he also watches such shows as How It’s Made shown on the Science Channel and Brainiac shown on G4.

The popular belief out there about gifted kids is that these kids’ parents are pushy and “train” the kids to be gifted.

I admit, we have always tried to read a lot to him (if he’d sit and listen). And we have been trying our best to answer the never ending stream of questions he’s been asking over the years, starting from “What does this word say?” to, most recently, “Why are the red blood cells red?” and “What is infinity divided by two?”.

Our son also attended a Montessori preschool for two years and they have wonderful educational materials that, in my opinion, help kids learn how to read, write, and do math much faster than the conventional methods teachers use. I believe that academically he progressed at that Montessori school much faster than he would have at a regular preschool (but he also progressed faster than his peers in his Montessori class).

And yes, if we made him watch the Cartoon Network instead of letting him watch the Discovery Science Channel, he would not know more about the solar system and the universe than I do.

But giftedness, or as some call it “raw intelligence,” is not something that can be “trained” or”taught.” I suppose if we kept our son locked up in a dark cellar he would not know as much as he knows, but I have a feeling he would figure out his way out of there anyway.

When he was two and started daycare, his teachers wrote in a monthly report that he likes exploring the room and that in his explorations he has dismantled the faucet above the kids’ sink. They had not known that the faucet could be taken apart because no other child before had tried to do it.

That ties into our son being special needs.

As much as I love him and admire his gifts, there are times when I’m absolutely sure a diagnosis of ADHD is just a matter of time. He’s always on the go, touching everything, pushing all the buttons he sees, opening all the drawers and doors, or at least trying to do that, no matter where we are, at home, in the doctor’s office, at the grocery store, or anywhere we are. He can’t eat a meal sitting down, he has to stand and fidgets all the time. When he sits down, he still fidgets, and sometimes he falls down and appears truly surprised he fell down. On the other hand, when we send him to the bathroom to brush his teeth, and go in after ten minutes to check on him, more likely than not he is has gotten distracted and is just playing with water, and of course has completely forgotten why he went there in the first place.

There are also times when I’m afraid he will end up heavily medicated or worse, institutionalized. Because even though for the most part he’s a sweet and loving kid, there are times when he licks the back of the seat in front of him, his hands, or the window and does not understand why I am so opposed to him doing it. There are times when he goes in his pants because he is too absorbed in doing something and is “too busy” to go to the bathroom. He also does not seem to understand why he should not do that. And there are times when he just spins or seems to be in his own world, ignoring or not hearing what we are trying to tell him.

And then, not very often, but every now and then, especially after a long weekend full of him being wild and unresponsive, the medication route looks very enticing.

If only I knew what is the right thing to do…

There are days when I am completely exhausted from dealing with him and originally I wrote here that there are times when I wished he were institutionalized or medicated, but I’ve decided to change that. The truth is, even on those days, after he goes to bed and I have had a chance to sit and think and calm down, all I really want is to know how to help him have a happy life.

By the way, our son does not have a clear cut diagnosis. He’s been evaluated by three different specialists, each from a very renowned clinic or center, specializing in child development and various mental, neurological, and developmental disorders. And each of them told us a different thing and recommended a different course of action to help him.

When was three, we were told by an MD, MPH specializing in developmental and behavioral pediatrics from the Developmental Medicine Center at the Children’s Hospital in Boston that he has a Developmental Coordination Disorder. That was also when the tests confirmed he’s gifted.

When he was five, an MD specializing in Autism spectrum disorders, attentional difficulties, learning disabilities and school problems at the Learning and Developmental Disabilities Evaluation and Rehabilitations Services (LADDERS) center said that he has PDD-NOS.

Shortly after that, we were told by a PhD in psychology specializing in Autism and Developmental Disabilities at the Center for Child and Adolescent Development that he’s “just a plain old bright fun kid.”

Both my husband and I are very committed to helping him. We always attend the IEP meetings together. I’ve also been reading a lot of books, scouring the Internet for information. But, as my husband says, it’s hard to help him, if we don’t know what it is we’re dealing with and what the best course of action would be. This blog is intended to be my record of what we’ve tried, what we’ve learned, and any progress (or lack thereof). I can already see it will also be therapeutic for me to write about our son. And if anyone happens to find any useful information here, that would be an added benefit.