Thursday, February 11, 2010

An Unfortunate Series of Events

In the wake of my son's first-ever disciplinary action at school, my husband spoke this week in person with BES's principal. BES had not given her all of the details of the incident that led up to him chasing, grabbing and pushing a student last week. He told her simply that the other student "had gone like this" [placed hands near his chest] and so "he'd lost his temper".

When she found out what had actually been taking place, she labelled it sexual harassment and promised to re-open a discussion with the perpetrators. She is aware of my son's autism diagnosis--in fact, she stated that last week she was reluctant to give him the one day of suspension--but felt that according to school "zero tolerance" policy, she had no choice. We seem to have a shared sense of what happened and what should be done.

Still, as they say in Wrightslaw, if it is not in writing, it didn't take here is my written response...

Dear Principal:

I wanted to clarify the events that led up to my son BES’s In School Suspension last Friday, February X, 20XX.

On Friday, as BES was standing at his locker, a boy came up to him and called him “scoops” and cupped his chest. This kind of transgression has been going on for some time, as evidenced by my January 8 email to BES’s inclusion teacher. At that time, I wrote:

BES has been telling me that there are boys at school who are making fun of his weight (specifically, they are going up to him and cupping his chest)…I am concerned that BES might need some additional coping skills in dealing with the teasing and I wanted to make you aware of what was going on. My feeling is this: I hate to see my son teased. At the same time, I understand that dealing with challenging social situations is an important part of growing is, in fact, one of the reasons that I felt it was time for him to return to public school.

Mr. Inclusion told me that he would look out for this behavior. Later in the day he wrote back to me and said, “I have spoken to the boys who have been bothering BES, hopefully it will stop.”

While BES did not continue to communicate this to Mr. Inclusion, Ms. Psychologist, or myself, this was still apparently continuing to take place in gym and less structured social settings throughout the day. In fact, it had become something that many students were doing to BES. And so, last Friday morning, he had had enough and he decided to take matters into his own hands. When a student went up to him, cupped him in the chest and called him “scoops,” he ran after the student, grabbed him by the shirt and pushed him into a door.

This is a slightly different version of events than the paperwork that was sent home detailing the reason for BES’s In School Suspension, which states:

BES was angry at another student who was insinuating an insult at him. In response, BES chased him, grabbed him by the shirt, and pushed him into a door.

I understand that BES might not have conveyed the events that led up to this behavior to you in their entirety—probably out of embarrassment—and that this is the reason why the paperwork was filled out to imply that BES responded to an “insinuation” as opposed to a chronic and pervasive stressor in his educational environment. Additionally, my husband and I felt that it was very important for BES to understand that he did have some culpability in this event. He did touch another student. And he did this after opting not to use the adult support structures he has been provided with in school. As I wrote to Mr. Inclusion on Monday:

When I asked BES, "Why didn't you speak about your frustration with this problem with Mr. Inclusion or Mrs. Psychologist? Why did you let yourself get to a point where you acted out physically against another student?" he said that he has been getting this treatment from a lot of the boys but that he "didn't want to rat out another student for only doing something once.”

I felt that he needed to see that there could be a negative consequence for “not ratting someone out.” For this reason I did not question the one day of In School Suspension.

As you are probably aware, BES has a diagnosis from the local university that has implications for mood regulation, gross and fine motor skills, and use and understanding of social and pragmatic language. Because of this set of developmental differences, he is more likely to experience bullying, more likely to be weak in athletics and refrain from physical activity, and more likely to make poor choices when confronted with challenging or complex social situations.

We work very hard at home with BES to teach him how to negotiate these challenges and I know that Mr. Inclusion, Ms. Psychologist and his teachers work hard with him at school, as well. However, when you are working with a child who has a degree of social blindness, it makes sense to me that social mistakes have a greater likelihood of occurring along the way. What I am hoping to do now is maximize the learning opportunities of this incident.

We have spoken to BES about this incident. We have impressed upon him the importance of using his adult supports while in school if he is feeling overwhelmed. We have recently enrolled him in a Running Program through Local College (which he is actually enjoying very much) so that he feels healthier and is not as vulnerable to remarks about his appearance.

Under the circumstances, I believe a revised Discipline Letter should be placed in BES’s school file explaining more fully what lead up to this suspension. Is this possible? Additionally, my husband and I would like to know, as they are developed, what actions the school will be taking to make sure that our son is not bullied in school in the future.

Please feel free to contact me by email , by phone, or in writing if you would like to discuss this further. And thank you very much for your time and effort in dealing with the complexities of this incident.


Tuesday, October 13, 2009

5 Reasons Why I Get My Family Flu Shots

...and why others should consider getting them, too.


FACT: I have a child with an impaired autoimmune system. SOMEWHAT RELATED FACT: He tolerates flu shots well. I believe (and his immunologist concurs) that his annual flu shot minimizes his risk of developing more serious flu complications, complications that could land him in the hospital. Any time that I can avoid an unnecessary stay in a germ-laden waiting room--or worse yet: an emergency room filled with antibiotic-resistant absolutely a good thing.

The older my child gets, the better he is able to fight illness (discounting staph aureas and aspergillus which will be life-long problems). However, his disease-fighting system will never be optimal--he will most likely need antibiotic therapy his entire life. It stands to reason, then, that the more people in his community that opt for a flu shot, the lower his chances are of exposure to an illness that is absolutely primed to attack his greatest area of vulnerability, his lungs--ergo: the more time we buy. The longer he goes without an extended illness, the more even his social, emotional, and educational development will be, the better his life outcomes are. These are all mightily beneficial things for him and my family.

FACT: If you vaccinate your child against the flu, against any illness, it benefits my son.

But let us assume, for the sake of argument, that you have not succumbed to the many charms of my younger son. You see flu shots (perhaps all innoculations) as "an unnecessary danger" and so see no reason to potentially jeopardize your loved one for the sake of my loved one. Fair enough. I am primal enough in my love for my child to actually understand that concept.

I need to ask every parent unwilling to vaccinate their child, though: what are you basing that decision upon? Are you basing your decision on a hunch supported by a few possibly-spurious news segments? Or are you basing that decision upon multiple studies done by reputable scientists, published in peer-reviewed journals, providing replicable results? Because, to me, that is the definition of science, ie: the definition of sound decision-making. Those are the game-rules my family is required to play by...

But I digress. Let us assume you do not know anyone with a primary autoimmune disorder--so this argument truly does not resonate with you. You still question the need to vaccinate against the seasonal flu or H1N1. We shall move on, then...


You may not know my son, but perhaps you love someone with a disability. According to the blog Disability Scoop:

Unlike the traditional seasonal flu which targets the elderly and the very young, H1N1 is predominantly affecting children and young adults.

The following groups are at high risk, according to Georgina Peacock, a developmental pediatrician who is co-leading the Centers for Disease Control and Prevention’s children’s health team responding to H1N1:

• Children under 2-years-old.

• Individuals with neurologic disorders like epilepsy, cerebral palsy, intellectual disability or developmental delay. This risk is further heightened for those who have multiple disabilities or respiratory problems.

• People who have problems with immune functioning, heart disease or their endocrine system, plus those who have conditions like diabetes or a metabolic disorder.



Did you see former Senate Majority Leader Bill Frist last week on Real Time with Bill Maher? I adore Bill Maher. He is prickly and entertaining and fearless and IN THIS CASE DEEPLY FLAWED IN HIS LOGIC. He at one point in this interview accuses Dr. Frist of trying to make his case for vaccination via anectodotal evidence. However, when Dr. Frist brings up a New England Journal of Medicine study that claims that women are nine times more likely to die of H1N1 while pregnant, Maher immediately changes the subject to Bono and Africa. This is the difference between "hard-hitting journalism" and "news as entertainment" in my opinion, but that is a post for another day...

Perhaps you know someone that is pregnant? Or are someone who is pregnant? According to the National Institute of Allergy and Infectious Disease:

As of Sept. 3, 2009, 6 percent of confirmed fatalities from 2009 H1N1 influenza infection have been pregnant women (note: pregnant women make up less than 1% of the general population), according to the Centers for Disease Control and Prevention (CDC). Pregnant women infected with the 2009 H1N1 influenza virus also have a higher rate of hospitalization than the general population.
Essentially, what we are being told is that H1N1 is more dangerous for pregnant women to contract than many other demographics of the population. How do we help and support pregnant woman in this instance? By limiting their exposure to H1N1. By getting flu shots.

Let's expand the sphere of benefit even further, though, and say that:


According to the blog Care2:

Approximately 57 million Americans, 22 million of them women, have no paid sick days. The H1N1 virus is not just a health issue. It is a social and an economic issue. Working parents need options to care for their sick children without the fear of losing their daily wages or perhaps their jobs.

Now this decision to innoculate or no becomes a social issue and a woman's rights issue...interesting, right? There are many sometimes surprising groups benefiting from your decision to receive a flu shot.


And yeah, just in case you didn't already think I was some sort of obsessive nutcase, I offer a quote from everyone's favorite socialist rag, The New Yorker:

In fact, the new H1N1 virus is similar to seasonal flu in its severity. In the United States, influenza regularly ranks among the ten leading causes of death, infecting up to twenty per cent of the population. It kills roughly thirty-five thousand Americans every year and sends hundreds of thousands to the hospital. Even relatively mild pandemics, like those of 1957 and 1968, have been health-care disasters: the first killed two million people and the second a million.

In short: even in a good year, the flu is the tenth leading cause of death in the United States. Even in a good year, up to 1 of every 5 people in the country will have to take time off from work because they are sick, costing businesses money, filling emergency rooms, disrupting lives, jobs, educations...

1 out of 5. Cross-reference this statistic with the disability community, with single, working and pregnant women, and with the rare people like my son. Now we're starting to talk about real people...people you might know and care about...who are affected by your choice to vaccinate. Are you still comfortable with your choice to avoid vaccination? Are you absolutely sure that your perceived dangers to vaccination are legitimate? Would you bet your child's life on your decision? Because my child's life is potentially on the line.

Now: you can call this post a big, juicy rationalization based on one woman's personal experiences/biases as a mother to a child born with a primary autoimmune disorder. can call it a well-reasoned treatise on the near-universal benefits of flu vaccination. (Individuals with egg allergies are excused from this dialog.) Your call. What you cannot do, however, is malign what I perceive as a sound health practice, without expecting me to speak up and defend it.


Friday, October 9, 2009

Sometimes a Rose is Just a Rose

At the end of the summer, at a meeting with district CSE chairs to discuss my sons' re-introduction to the public school system after our two years of homeschooling, it was suggested that I convene immediately with James' school team to explain his unusual health issues, due to his Hyper IgE diagnosis. To this end, I sent in a formal meeting-request to his classroom teacher on James' second day of school.

Early the following week, the meeting took place. At the time, my husband asked if I needed him there. I assured him that I did not, that this meeting would not be worth taking a half-day off from work.

So. I show up. Introductions are made. I go through James' timeline of illnesses, including his most recent bout of pneumonia (with concurrent pneumatoceles) last spring. Then I explain the components of Hyper IgE: skin, lungs, staph aureas, asperigillus, antibiotics, blood tests, teeth, bones. I also explain how James fell off a scooter at a friend's house last spring, refused to get up because he claimed to be in pain, and was taken by ambulance for a full body scan at the local hospital, where he was found completely healthy. I emphasize repeatedly, as I recount this, that James is beginning to become aware of his health differences and that this is causing him some anxiety.

When I explain that a predisposition to long bone breakage is a component in 65% of the 200-plus people world-wide diagnosed with Hyper IgE, and that this has implications for my son's safety/vulnerability in school, the school nurse loudly slaps a series of forms on the table in front of me and emphatically states:
Your son will not be able to take part in recess or gym until these are filled out.

I look down. The forms are checklists of activities, with boxes indicating to what degree they are allowed.
Skipping? Vigorous skipping? Jumping? Jumping from 1 foot? Jumping from 3 feet? Jumping on 1 foot? Jumping on 2 feet? Jumping rope? Running jumps? Skipping jumps? Often? Sporadically? Never?
My first thought is: WOW! no one has ever asked me to fill one of THESE out before! I wish I'd known these existed. I would have been able to do SO MUCH LESS explaining!

This thought was followed quickly by: How long have they had a form like this? Why haven't I ever seen one before?

And finally: No gym or recess until the forms are filled out? So my son will be segregated from his peers during all opportunities for recreation until the forms are filled out? He attended school here for YEARS going to gym and recess. What is the difference now?

I give voice to this last thought. I am immediately told:
You know: there is *nothing* in your son's file to indicate that this is necessary.
I am thunderstruck. My son's unusual health concerns are such an integral part of my life, my thought processes, my parenting experience. It hadn't ever occurred to me that I would be disbelieved. Had apparently been disbelieved.

I turn to the the school nurse. I remind her that while James was attending this school in kindergarten, first, and second grade, she had applied suntan lotion to him every day prior to recess...because he was photosensitive...because he was taking bactrum...because he had an AUTOIMMUNE DISORDER.

I am told, again:
There is nothing in your son's file saying that he has an autoimmune disorder. Your son had a prescription from his pediatrician for sunscreen, that was all.
And I realize. This all suddenly makes sense. Why I always received such an odd reception from all of my sons' teachers, why my older son's fourth grade teacher had once shouted at me:
I have heard all about you. Don't think I haven't! And don't think I am not writing down everything you do or say!
And, when my son with a diagnosed predisposition to long-bone breakage was being hit, kicked and bullied by another child and repeatedly sent to the nurse's office, why the principal would not return my concerned phone calls...

She'd thought I was crazy. They had all believed that I was making up this whole autoimmune disorder thing.

And at every IEP meeting, and every parent-teacher conference I had ever attended, everything I had said had essentially gone unheard. I had not been part of an IEP "team" for my child, I had been a voice to be put up with. All of the time that I had spent learning about my son's health and neurological needs had actually worked against me. My intimate knowledge of my sons' health had confirmed this school's suspicions of Munchausen's by Proxy.
But it gets better. Because once MBP seemed a viable option, then all of my actions, everything I said, seemed to confirm it...
So. After the official team meeting, everyone but the school psychologist and James' classroom teacher get up and leave. The teacher then opens a folder and takes out a class assignment: a picture that James drew as a birthday card for a friend. Each child had been asked to create a birthday card for another child in the class on the first day of school.

I take the sheet of paper. On the front is a very good likeness of Boba Fett. Who is shooting a child (with a shirt that says "James") who is yelling "nooooooooooo." On the inside of the card are the words
Happy Birthday, bub. Enjoy your cake.
There is no question, the card seems in poor taste--does not...immediately evoke a festive ambiance. I'm not quite sure what my son was trying to communicate. My hand flies to my mouth and I whisper, "Oh, GOD!"

This is when the school psychologist explains to me that she is seriously concerned about James' mental health. That "depression can take on different guises in children than in adults."

"My son is not depressed!" I state. Just like someone in denial. "Whatever else is going on with him health-wise, learning-wise, he is not depressed. You just have to spend five minutes with him to see that."

As James, himself, later explained:
I was just trying to be funny.
However, at the meeting, it was explained to me that parents are not always the best judges of these things...

Now, I want to go on record as saying that the school psychologist always acted in an extremely professional manner towards me. Additionally, she made a point of saying in front of my son's entire team at a later meeting:
"I have absolutely taken suicidal ideation out of consideration for James."
But as a realize that someone considered suicidal ideation AS A POSSIBILITY for your child, even for a moment...well, if you are like me, you will be hit with a sudden need to cry briefly a couple of times a day until the reality of it all sinks in. And some of these times will unfortunately be while you are working.

The day after this first team meeting, I sent in a copy of James' diagnosis letter, date-stamped by the school district as received in May of 2004. Just as he was transitioning out of preschool, and immediately before the district secretary typed up a new folder for him: a folder that would hold all the records produced during his years in elementary school.

Sunday, October 4, 2009

Transitioning Back into Public School

In the past week, Boy the Second has come home most days with a new "how I horrified my teacher today" tale to share...

You know, I was talking to my teacher and SHE SAYS that it was against the law for dad to let me drive the car around in the old Home Depot parking lot...


You know what MY TEACHER SAID? She said that I'm not allowed to sell my toys at lunch time to the other kids, and she made me give back the money I got for my Pokemon pencil sharpener. I was a fair deal and the other kid seemed really happy with the sharpener. I'm not sure what she was so upset about...

So I asked my teacher if she thought that (can I say it? the 'h' word?) hell was the worst curse word in existence, because I didn't think it was but some of the other kids were thinking that it WAS THE WORST CURSE WORD IN EXISTENCE...because I'm thinking that the three 'D' words are at least as bad...

"Waitaminnit," says the husband, looking to me for confirmation. There are three 'D' words?

"Um?" I reply helpfully.

"Well, there's, damn," the firstborn offers helpfully. "And you know, THE GUY ONE..."

"Do you need me to say it?" Boy II offers.

"No, no, we get it," their dad and I say quickly.


"Well, the one that ends in -bag," Son II explains.

"Riiiiiiiiiiiiiight," I nod. "Please. PLEASE TELL ME that you DID NOT USE THIS WORD IN FRONT OF YOUR TEACHER."

"No, just hell. She says that her kids are 23 and 19 and THEY don't use that word. Do you think that's true?"

Sunday, November 16, 2008

I Love Web 2.0 (The Update)

Yet another reason to madly covet the iPhone (you will be mine, most gorgeous piece of technology! I do not care if AT&T regularly drops calls on Long Island!) is iPhone apps: little programs that one can purchase to customize the iPhone experience...little apps that may be built upon creative commons-licensed bits of data, for instance.

Enter: Schmap! An app that maps your destination for you AND provides you with pictures of top points of interest. A very nice representative from Schmap apparently did a flickr search for Fort Myers and came upon some of my older son's pictures from our trip last winter, and requested permission to use them.

How cool is that? To be twelve and to be able to say, "Yeah, this company asked my permission to use some of my pictures in their map software." certain extremely nerdy but lovable circles, it would be considered cool...

Monday, November 10, 2008

Do You See What I'm Up Against?

Photo Title: The Secret Life of Boys

In the younger son's science textbook:

Question: In your own words, explain the reason why the teacher added food coloring to the glass of water.

Answer: Yoxp fxou Pplm Oooooommpa.

Says the boy: Well, it says "in my own words..."

Friday, April 25, 2008

With All Due Respect to Rudolf Steiner

There are many, many things that I find compelling about Rudolf Steiner's ideas on development and pedagogy--mostly because Steiner believed in allowing children to fully inhabit their childhoods. Ideally, Waldorf-educated children are allowed to unfold, not forced to leap from phase to phase of development as though they were being chased by wolves...

But where Steiner and I have always parted over the use of technology in youth. Although, since Steiner was born in 1861--well before Gates or Jobs or Case--I guess I mean "those who interpret Steiner today." The views of his apostles, as it were. These followers of Steiner's pedagogical philosophy, anthroposophy, emphasize personal experience over technology:
A central aim of Waldorf Education is to stimulate the healthy development of the child's own imagination. Waldorf teachers are concerned that electronic media hampers the development of the child's imagination. They are concerned about the physical effects of the medium on the developing child as well as the content of much of the programming.
And, while I absolutely get this idea--I regularly limit my children's use of screens-- anthroposophy as it is currently interpreted still flies in the face of an idea I strongly support: the concept of Universal Design for Learning, or UDL. UDL is a theory of learning that says that the teacher can foster necessary analytical skills in students with learning differences, when necessary, by circumnavigating the disability through the use of appropriate assistive technology:
  • The dyslexic child can use technology to circumnavigate literacy issues;
  • The fine-motor-impaired child can use technology to assist with, for instance, writing;
  • The visually-impaired child uses technology to assist with visual issues...
Etc., etc.

Because: there is a point where the learning style and differences of the atypical child must be acknowledged: political correctness (the "handicapable" mind-set) and dogma (adherence to a philosophy at the expense of an individual's development) can both become a barrier to learning instead of a support. A teacher's responsibility under these circumstances is to provide a developing mind with the tools it requires to fully that may even require electricity...LED screens...

Too: sometimes technology can just be fun--in the best, most child-like sense--like these Pivot animations the boys have created and that Ben has uploaded to his Flickr page...

(Note to self: show the first-born the sound-editing software that comes with his laptop.)