5 Reasons Why I Get My Family Flu Shots

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

FLU SHOTS ARE BENEFICIAL FOR MANY (BUT NOT ALL)
CHILDREN WITH PRIMARY AUTOIMMUNE DISORDERS

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 bugs...is 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...

H1N1 FLU SHOTS ARE SMART CHOICES FOR INDIVIDUALS WITH
DISABILITIES AND NEUROLOGICAL DISORDERS

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.

H1N1 FLU SHOTS HAVE DOCUMENTED

HEALTH BENEFITS FOR PREGNANT WOMEN

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:

FLU SHOTS BENEFIT WORKING MOTHERS--PARTICULARLY SINGLE WORKING MOTHERS WITHOUT ACCESS TO FLEX BENEFITS OR SICK LEAVE

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.

FLU SHOTS BENEFIT THE ECONOMY & SOCIETY AS A WHOLE

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. Or...preferably...you 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.

/rant

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 parent...to 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.

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...

Monday:

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...

Wednesday:

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 mean...it was a fair deal and the other kid seemed really happy with the sharpener. I'm not sure what she was so upset about...

Friday:

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.

"...And?"

"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?"

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."

Well...in certain extremely nerdy but lovable circles, it would be considered cool...

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..."

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 ways...is 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 flower...tools 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.)

A Call to the Community

Read through to the bottom to find out how you can help!

Review:

In January of 2008, as a result of a new, narrow interpretation of IDEA (federal special education law), the New York State Education Department sent a memo to all state school districts informing them that special education services to homeschooled special education students would have to be terminated no later than mid-March, 2008. Essentially: because IDEA 2004 does not specifically identify homeschooled students as possible recipients of IDEA funds and only identifies "public" and "private" students as eligible for these federal funds, transmission of services to homeschooled students (who are considered "other schooled" in the state of New York) could possibly put New York "out of compliance" with IDEA and could possibly jeopardize New York's continued ability to receive federal monies under IDEA.

This act was done despite:

1. The fact that these services had previously been budgeted for the year and had already been guaranteed to these students.
2. The fact that the families involved were provided with little notice or recourse to due process.

In response, a group of parents from around the state who were affected by this decision joined together to create a task force to reinstate services. They were joined in this effort by, among others, John Munson of NYHEN, Attorney Bridgit Burke from Albany Law School and Attorney TJ Schmidt from the Home School Legal Defense Association. The task force has convened weekly via conference call these past two months to strategize.

The task force was set up with two aims:

1. To re-instate transmission of services to homeschooled special education children.
2. To achieve goal number one in such a way that the homeschooling community at-large is impacted as little as possible.
   

Big News:

The Task Force to Re-Instate Services to Special Ed. Homeschooled Students has obtained a meeting with Dr. Rebecca Cort, Deputy Commissioner, Office of Vocational and Educational Services for Individuals with Disabilities (VESID), scheduled for this Friday. Dr. Cort is a high-ranking member of the State Education Department (SED) and it is the hope of the task force that this meeting will result in a "meeting of the minds" regarding the language to be used in an upcoming "program" bill. The task force has been advised that a "program bill" (a bill that is generated from within the state government infrastructure) would be our best hope for a successful outcome, as these bills are nearly automatic in their passage.

1. If this meeting goes successfully, we could be well on the road to reinstating services.
2. Dr. Cort has already made it clear to the task force that she is unwilling to accept either of the two bill-proposals previously generated by the task force. This means that the task force's best hope for success lies in respectfully tweaking the SED-generated proposal.
   

This is a point the task force feels the homeschooling community should be fully cognizant of: based on the realities of this situation, of the personally-held philosophies on homeschooling held by Dr. Cort and other members of the State Education Department, if we do not hew as closely as possible to the language previously proposed by the State Education Department, the task force has very little chance of achieving its primary mission. We have been invited as guests to the decision-making table. We are not, as it were, the hosts throwing the party.


The task force has three objections to the language of the SED bill to reinstate services to homeschooled special education students. They are:

1. Location of Services

• Dr. Cort's office wants to make sure that the language of the bill does not guarantee that services for homeschooled students take place in the home, but only that they may take place in the home, at the discretion of the district.

• The task force believes that the language in this part of the bill should be made more explicit. Additionally, the task force would prefer that the decision for location of services take place at the "Committee for Special Education" level and not at the district level, as the CSE would have specific knowledge regarding the needs and situation of the individual child. This issue is particularly worrisome for parents of medically fragile children and parents within the New York City school system (who often must receive services at home because the city schools do not have the space or time to accommodate homeschooled students).
  

2. The IHIP

• Dr. Cort's office wants to make sure that homeschooled students do not receive special education services unless they are in compliance with state law, so no child can receive services until an IHIP has been filed with the district.

• The task force is concerned that the language of this section of the bill will lead districts to believe that they have a "perceived duty" to more-closely scrutinize the IHIPs of special education students, and would like to add clarifying language to the bill to avoid that possible interpretation. Additionally, the task force is concerned that provision of services will be delayed until an IHIP is approved, as many districts do not review IHIPs over the summer when the majority of the staff may be on vacation.

3. Use of the term 'Homeschooled'

• Since the term 'homeschooled' is not defined elsewhere in the legislation, the task force is concerned that confusion might ensue between students that are homeschooled (most often by their families) and students that are home-educated (due to health issues, rule infractions, etc. and who are educated by the district). The task force would like to explore the use of other terms already established within the legislation.

What You Can Do:

Members of the task force have also been in touch with the media on this subject. For instance, a piece recently aired on ABC News (or copy and paste this hard link: http://abclocal.go.com/wabc/story?section=news/education&id=6071194). By April 20, we should have posted a link on NY-Alert to a story in the New York Times on this issue as well. We encourage members of the homeschool community to visit these links and offer commentary in the discussion section of the story and also then ask that they encourage their friends and family to do the same. This will be one way that the State Education Department will see that ours is a relevant cause that is being followed by the public and that special education homeschooled students are not a vulnerable subset standing alone within the homeschooling community.

So, please, visit the ABC link and make a comment. Additionally, check NY-Alert next week for the Times link, as well!

On behalf of the the task force: Thank you!
Andrea Stolz