10.31.2010

How Leo Does Halloween

Here are some things Leo has learned this Halloween season:

1) Always go to the pumpkin patch. Try to do so late on a Monday afternoon, when not many other people will be there -- that way you can jump off the hay bale pyramid as many times as you like, without having to wait in line forever.

2) Because if you go to a Halloween activity that is bustling, for instance the Halloween House at your big sister's school, you may get overstimulated and take out your short-circuiting on your little sister the princess devil bat fairy by pushing her down in front of twenty or so people. Neither she nor your mother will appreciate this -- your mother will calmly and without talking to you or giving you eye contact have you sit down in a quiet space so you can regroup, which is helpful but boring. She will also then give all her attention to your little sister while watching you out of the corner of her eye, which is totally unfair. Conclusion: Haunted Houses suck at this point in time.

3) What is better: going to the Halloween parade at your little sister's school, because parades are awesome! Marching along with other people can't be beat -- you get to move around, it's easy to know what to do, and everyone on the sidelines is cheering just for you -- the most handsome red ninja in town, with the very best stretchy ninja hoodie that is effectively a body sock.

4) What is unknown: Trick or Treating. It's been a while since you went, but it's a routine-based activity, and -- dude -- you get candy. Plus your cousins invited you to use their house in the middle of a fruitful trick or treat neighborhood as a base, so you can retreat if need be. You are cautiously optimistic, though this attitude may be the result of some projection courtesy of your mother.

Have a great Halloween, Leo!

Leo's sisters have been getting into the Halloween spirit as well. Mali has been making a series of SCARY DRAWINGS THAT ARE SCARY. Her "Slayer" drawing below is my favorite, and makes me suspect that our youngest has been sneaking in while her older sister and I watch Buffy the Vampire Slayer. (Best moment so far: Iz's outrage upon discovering Angel is a vampire.) Click through to Flickr to see the whole series.

India's Halloween: Slayer!

We took all of Mali's drawings and made a SCARY PICTURES HALLOWEEN MOBILE. Mostly because we have a lot of extra hangers, and Iz's friend Violet's mother the interior design genius gets exasperated each time she walks into our house and realizes that we still haven't hung anything from the weird second-story crossbeam we installed two years ago after Leelo got into the habit of charging out of his room on the second story and into the not-terribly-sturdy railing. Iz added the spider.

Since Iz is now a very big girl, her Halloween tastes are becoming less fanciful. Here is her Halloween pumpkin (courtesy of carving session with Rook -- the rest of us are happy enough with our squashes intact). Meanwhile we are having discussions about rap music and decoding misogyny.

Fingers crossed for all of us on this potential watershed holiday! I hope every single one of your kids -- super powered or not -- has a merry, happy, fabulously spooky Halloween.

10.25.2010

Pumpkin Patching 2010

Time for one of my favorite annual excursions with the kids:
The Pumpkin Patch!

Here is a boy who loves the pumpkin patch,
and has since he was teeny.
His sisters are fans as well.
Here are some ways to enjoy a pumpkin patch.


Pumpkins have a good weight and shape.
It feels nice to pick them up and hold them.
At our local patch, you can search around
until you find one that is just right --
rather like finding the right rock.


Pumpkins are good for working on balance.
Who needs fancy adaptive equipment!


Pumpkin patch dirt has an excellent texture,
especially after a rainy weekend.
It feels good to rub it all over your hands.


It feels less good -- on your ears -- 
when you put your dirt-loving hands in your mouth
and your mom shrieks "hands down!"
 (Keep holding on to your pumpkin, though.)

Pumpkin patch-goers live by their own code,
which does not require making nice for the camera, 
and allows for multi-sensory pumpkin interactions.


Jumping off hay bale pyramids is not mandated, 
plus it may lead to exhilaration
as well as post-jump displays of bravado.

If you are a child who excels at lining up and following other kids, 
especially in activities that require neither physical nor verbal interaction,
and you are nimble and fearless,
hay-bale-pyramid jumping is highly encouraged. 
Please repeat as many times as you like, 
or for as long as you can tolerate your mother's mother-henning.

Nothing beats an afternoon at the pumpkin patch*.


*I recommend click-zooming in on this pic. It's pretty cool.

Bustling on Every Imaginable Level

We are coming off one of the busiest two weeks of all time, which is why I haven't been present in this particular blogspace much -- I've been bustling on every imaginable level, dabbling in surreality such as getting quoted in the Wall Street Journal on my birthday (the digital edition goes up a day early, and there's video of Leelo in the attached Digits interview). It is odd and overwhelming and wonderful too.

Cowboy & Wills: A Love StoryI also interviewed Monica Holloway, author of a book I frequently recommend: Cowboy and Wills.* Her story recounts her son's struggles with autism and severe anxiety, the variety of approaches she explored, and the successes Wills continues to enjoy due to his and his team's hard work. I wasn't able to include all of our conversation in the BlogHer interview -- Monica is a charming conversationalist, and we talked for a long time. But her pointers, the ways she and her son's longtime therapist came up with to help ease Wills through transitions and other manifestations of his anxiety, are worth your time. It's especially warming to hear how beautifully Wills is doing now that he is thirteen, approaching puberty, and a self-taught and very successful baseball player. Even though Wills and Leo are so different, I tend to feel that any one of our kids' successes is a victory for us all. I'd like to thank Monica for sharing her story, and encourage you to leave a comment if you feel the same way.

I also wrote a guest post for SFGate, by invitation of Laura Shumaker, about an incident in which Leo accidentally touched the ass of a lady in a video store without me noticing -- and how badly both she and I reacted. Mostly, I want a do-over so I could calmly ask that lady exactly how Leelo touched her, explain that he has autism and that it was unintentional, and apologize -- even though she was rude -- because we are supposed to be ambassadors for our children and loved ones with autism when they aren't able to fill that role themselves. I'm fascinated by the range of reactions to the post -- the comments on the original article come from both inside and outside the autism community, and range from pleasant to dickheaded, ignorant to supportive. The comments on Laura's own Facebook page are varied but mostly warm and understanding. Then Autism Speaks shared the post on their Facebook wall (scroll down) which has generated more than 100 comments, from varied perspectives. Again, fascinating.

Our lives have been wacky-busy outside the computer as well. I don't know if I can even remember everything! Um. SEPTAR put on a great presentation on incorporating music into your child's therapy and life, including segments from Radiolab's episode on musical language. Leelo's such a musical boy, it shouldn't have surprised me how many of the therapist's suggestions we were already applying, such as singing Leo through scripted transitions, and using mnemonic devices to help him remember words and phrases. But I'd like to see if she can work with Leo, perhaps arranging musical lessons with his sisters to give them an activity they can all participate in and enjoy.

Speaking of his sisters and music, Iz slam-dunked her several-degrees-harder than previous years science test, on cell biology -- in part through cell processes songs that she and her friends made up. She also did a lot of studying via IM, which made Seymour dubious -- but she asked him to let her try it, and if it didn't work, she wouldn't use it for the next test. Let's just say that she couldn't have received a better grade, so Seymour is convinced. Iz is currently in love with amoebas and determined to be a microbiologist.

We spent the past weekend with our dear, dear, dear friends Floyd and TLF, who flew most of the way across the country to celebrate TLF's 40th birthday with us, bringing their extra-cute Talia the four-year-old towhead along. She and Mali were desperately in love with each other's playtime presence, and refused to be separated during waking hours. Even when Jennyalice's Lucy joined them on a Floyd attack:



This week was also the fruition of several weeks' worth of long, long days for Iz: her school put on a production of A Midsummer Night's Dream, relocated to a high school -- with five Pucks! -- in which Iz played the head fairy/cheerleader. MND is probably the most audience- and young-actor-friendly Shakespeare play to begin with, but Iz and her friends were also really good -- especially the eighth-grader who played Bottom.

TLF and I spent a joint-birthday Saturday near Sebastopol at Osmosis spa, getting our heads heat-fried and our hard drives wiped -- we emerged as entirely new people. If you're ever in the area and want a transformative massage, I recommend Joe H. at Osmosis, highly. And of course we went to Willow Wood afterwards, where I managed to not treat my bowl of polenta with goat cheese at though it were a trough. Barely. (TLF and I were extremely grateful to Floyd & Seymour for watching all of those children so we could have a day out together.)

TLF and Floyd are former Deadwood residents, so there was a trip to Suraj as well, of course. Mali & Talia turned all available placemats into works of art. I particularly like this one, which is an alien family with a pet "mummy bird." I swear, if I had time, Mali could have a very busy Zazzle store -- her artwork is consistently zany and awesome.

More posts coming, soon. Leelo and Mali have both found lots of new apps that they like and keep returning to, plus Mali's been given a couple of excellent books she wants to share. And don't forget to visit The Thinking Person's Guide to Autism -- the phenomenal posts keep coming, though we've moved to a M-W-F posting schedule so we can actually get the book done.

I'm off to take the kids to our annual pumpkin patch excursion. I am grateful that the weather deities listened to my pleas, and turned off the heavenly taps so we could pick pumpkins under blue skies, instead of this past weekend's rain sheets.

How has your busy been?

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*Disclosure: Monica's publicist sent me a copy of Cowboy and Wills several months ago, but I initated the author interview. All stated opinions re: Monica's book are my own.

10.19.2010

Sid the Science Kid: A Vaccine Hero

I almost fell out of my chair laughing when I saw Kim Stagliano's latest opinion-unsupported-by-evidence essay about "vaccine safety" on HuffPo, because the object of her disapproval is Sid the Science Kid and his 2009 episode Getting a Shot: You Can Do It! Here is what Ms. Stagliano had to say:
"The vaccine safety community doesn't have big gun PR firms to coax the media into doing our bidding. There's no government support via PBS programs like New Sid the Science Kid Flu Vaccination Special Episode Now Available for Free Download on Flu.gov, enticing kids to get vaccines as if you're selling breakfast cereal."
Here's what the episode is actually about:
"In this special episode, Sid explains how vaccines work and shows millions of children what they can do to prevent the spread of the flu," said [Health and Human Services] Secretary Sebelius. "Sid will be a great messenger as we continue to find new and creative ways to reach out to children, adults, and families about how to stay healthy during flu season."

The U.S. Department of Health and Human Services and the Association for Prevention Teaching and Research worked with the Henson Company and its partners to create a special episode of which premiered on PBS on Monday, Oct. 26, 2009, with subsequent airings on Nov. 19, Nov. 27, and Dec. 21.
It's been a vaccine-y week here -- the comments at my Shot of Prevention: Why My Child With Autism Is Fully Vaccinated post have been closed at 583, as we kept getting the same two people sputtering at us, with the same tired, outdated misinformation. I'd like to again thank Amy & Christine from ECBT.org for republishing the post, and Liz, Emily, Chris, Tom, SJ, Ellen, Dee, Jen, Kev, Squillo, and everyone else who calmly jumped in with the evidence. If you have the time, the comments are a good read -- and would make an excellent study piece for anyone interested in how conspiracy theory proponents think.

Also, BlogHer syndicated my recent pertussis post, which the editors retitled The Pertussis Epidemic and The Anti-Vaccine Movement. The comment stream there is good reading too, because it contains fresh voices from parents both within and outside the autism community who are vehemently pro-vaccine -- because they are pro-healthy, protected, non-critically-ill children.

I'm going to be chuckling about the Sid-pummeling all week long -- it's almost as awesome as Jerry Falwell railing against Tinky Winky the Teletubby for promoting the homosexual agenda. Almost.

----

Full disclosure: Leo's godmother developed and executive produces Sid (and the also-controversial Dinosaur Train). But we didn't know about the Flu episode until it had already been produced.

10.14.2010

Our Pertussis Epidemic: Why, and What You Can Do

Note: A version of this essay has been syndicated on BlogHer.

Since school began in August, my children have brought home five pertussis (whooping cough) booster shot information sheets, and one pertussis exposure notice. These notices shocked me - I've gotten so used to being cocooned from vaccine-preventable disease due to the success of our national vaccination program -- and they should shock you, too -- into action, into getting your Tdap booster if you haven't already, into taking pertussis seriously.

Why are we seeing the worst pertussis epidemic in 55 years? Health officials says it is partially due to the cyclical nature of pertussis. But they also say it's due to parents' autism-related fears about vaccinating their kids, as NPR reported yesterday -- even though theories on vaccine-autism causation have been repeatedly dismissed -- because organizations like Generation Rescue are still flogging the vaccine theories (if you want to see how vehemently the anti-vaccination movement continues to defend its misinformation, check out the 430+ comments on my recent post, Why My Child With Autism Is Fully Vaccinated).

These vaccine fears, and the actions parents take on behalf of them, such as signing philosophical vaccine exemptions, have a real and deadly effect on public health. As reported by KQED's Gabriela Quirós, "...in states where getting an exemption is easy, such as in California, the rate of whooping cough was at least 50 percent higher than in states that made it more difficult for parents to opt out.**" (You can see the personal exemption rates for your child's school at: http://www.baycitizen.org/local/counties/immunizations/ -- only schools with kindergarten students are included.) This is why California is considering cutting back its immunization exemptions.

And this is why California will mandate pertussis vaccinations in all middle schoolers, starting July 2011, an action that pleases the anti-vaccination movement not at all:


The parent in this video, Moira Giammatteo, ably demonstrates how the anti-vaccination movement stokes viewers' righteous indignation -- she is complaining that she doesn't want her kid being "collateral damage" for other kids' health -- but she has already been accommodated, she had the right to take a personal exemption, whereas the children exposed to pertussis via their unvaccinated peers have been given no such choice. Yes, her child would have stay home during outbreaks -- that is the only safe option for any child exempt from immunization, whether for medical or philosophical reasons. Besides, who has ever heard anecdotes about middle schoolers regressing into autism? Ms. Giammatteo's claims are rooted in absurdity. I also think that if she had any real-world experience with pertussis victims, she might reconsider her message.

I recently participated in a pertussis/whooping cough education conference call, arranged by Every Child by Two (www.ecbt.org). The participants included Dr. Ari Brown, pediatrician and author of Baby 411, spokesperson for American Academy of Pediatrics, and medical advisor to Parent Magazine; Danielle Romaguera, mother of pertussis victim Gabrielle "Brie" Romaguera, Amy Pisani from Every Child by Two, and Christine Vara, blogger from ECBT's Shot of Prevention blog.

We talked about what pertussis is, what its symptoms are, and why it's so important for everyone -- not just children -- to get a pertussis booster to protect the vulnerable, especially infants too young for vaccinations. We also listened as Danielle Romaguera told us about the heartbreak of her daugher Brie's delayed pertussis diagnosis, prolonged suffering, and eventual death from an increasingly widespread but preventable disease. Unfortunately, stories like Brie's are becoming more common.

Dr. Brown opened, with a comprehensive pertussis information breakdown:

Tdap Boosters: Do You need to Get One?

The CDC has a recommendation in place since 2006 that people who are around newborns and infants - health care providers, parents, grandparents, or siblings -- recommended to get a pertussis booster shot -- Tdap. it's only been available since 2005, and is for anyone from age of 11 - 64. It's the Tetanus booster we're used to getting every 10 years, combined with the new pertussis booster. Before 2005, the last time any of us got a whooping cough booster was when we were five years old -- which means if you can't remember when  you got your last tetanus booster, then you probably didn't get the Tdap that covers whooping cough. And what we know about whooping cough vaccines is that your immunity only lasts ten years; it's not a forever immunity. Same thing with immunity from catching the disease itself - it may wane.

So, giving a booster to adults and young adults who are going to be around newborns is an important form of protection, but unfortunately that message has not gotten out there, and it's not being done routinely. There are health care providers who take care of adults who do offer the Tdap. There are obstetricians who routinely give the Tdap to mothers right after delivery. But it hasn't been universally adopted. I'm a pediatrician, I don't take care of adults. But when parents come into my office and ask me what they can do to protect their child, and I recommend the Tdap, this is new information that they're not hearing from their adult providers, and then they need to go back and talk to their adult providers about it.

The more we can get the message out about Tdap boosters for teenagers and adults, the better.

What Is Pertussis?

Pertussis is caused by a bacteria. It's called because "Whooping Cough" because some, not all, patients have a characteristic "whoop" at the end of their coughing spasms. The bacteria attach to the little tiny hairs (cilia) that line the respiratory system, and produce a toxin that paralyzes the cilia so they can't do what they normally do, which is to move secretions through your respiratory tract. The bacteria also inflame your respiratory tract so it gets swollen. Basically, you have very poor clearance of your lungs, and the secretions in them.

The three stages of whooping cough:
  1. Intially, you have common cold-like symptoms: Cough, slight fever, runny nose.
  2. About two weeks later, severe cough spasms start -- up to 15 - 20 per day, mostly at night , and the characteristic "whoop" sound, which occurs at the end of a spasm, appears -- and people start to realize their illness is more than a cold. Unfortunately infants may not have the "whoop," what happens to them is that they just can't catch their breath -- which is called apnea. Their faces turn red, and their lips may turn purple or blue, because they can't catch their breath. Older persons don't necessarily get the whoop either; it may appear as a cough they just can't seem to shake. This stage can go on for six weeks.
  3. Recovery and coughing less; this can last for six to twelve weeks.
The length of these three stages is why Whooping Cough used to be known as the "100 day cough."

Because immunity is not life-long, one of the key groups who get whooping cough is adults. And when they get this disease, they often initially think they have a cold they can't shake, or that their allergies are acting up. Sometimes they go to the doctor, but many times they just blow it off. Those are the people who are walking around spreading this disease, because the first three weeks is when they are contagious, and pertussis is spread through respiratory droplets. It's the bacteria in the nose, mouth, and throat which then end up on surfaces, and if someone then touches that surface, and then touches their mouth or nose, they've just acquired that disease.

Pertussis Can Kill Babies

So, in an older child or an adult, pertussis just may be a cough. But in a baby, and particularly in a baby under six months, pertussis can kill.

And that is why we're trying to protect this really vulnerable population. Those are the kids who are most likely to be admitted to the hospital. The number one complication of whooping cough that kills kids is pneumonia, but mostly they just can't catch their breath. The sad thing is that most of these kids, who are likely to be most affected, are also the ones who can't be vaccinated -- especially infants under two months who haven't even had their first vaccination. Seventy percent of the time, the person who exposes the child to the disease is someone in their own household -- these are kids who mostly aren't going to day care yet, these are not kids who are getting it from their three-year-old brother because he's been vaccinated -- they're getting it from their parents, grandparents, or child care provider. Those are the people who are spreading the illness to these babies.

The only way we can protect babies is by vaccinating the people around them.

The more educated parents are on this issue, the more empowered they can be to ask their provider for the Tdap/whooping cough booster shot. If you can't remember whether or not you already got it, you can ask your doctor to check your records. You don't necessarily have to go to your doctor for your Tdap shot, though; some pharmacies and even grocery stores offer the shot.

Questions from callers:

Caller: Is there any danger in being over-vaccinated? In getting the vaccination if it's been less than 10 years since your last booster?

Dr. Brown: That's a good reminder that adults are supposed to track their own vaccination records, not just those of their kids! There's probably an app for that. But right now, since the Tdap vaccine is only five years old, the CDC recommendation is to only get it once.

But if your last tetanus booster was a plain Td (tetanus-diphtheria), and you want to get Tdap after delivery, the recommendation is that you go ahead and get it, even if your Td tetanus booster was as recent as two years ago.

Caller: Why was Tdap developed? What was the motivation to develop it?

Dr. Brown: Technology. No one had ever been able to develop a good adult vaccine -- our immune systems don't mount the same kind of response as kids' do, immunity wanes over time.

Caller: Does it take a while for immunity to develop after the shot?

Dr. Brown: Yes, which is why the recommendation is for adults to get their shots at least four weeks before they'll be exposed to an infant, because that's how long it take for immunity to develop -- for everyone except pregnant women. Non-immunized pregnant women should get the Tdap immediately postpartum. They shouldn't routinely get the Tdap vaccine, though some medical organizations will recommend it if they think the risk to the infant is high -- it's just not the standard recommendation. So, ideally, this should be covered during a pre-conception visit with your OB -- which, since 50% of pregnancies are unplanned -- is the visit you should have with your OB if you have any inkling you might be becoming pregnant any time in the near future! It's also a good time to talk about other vaccinations you may need -- chicken pox, rubella, etc.

You also need to get other family members vaccinated -- more than four weeks before the baby is born.

Danielle Romaguera's Story

Danielle is one of the first stories on the VaccinateYourBaby.org victims page. She had a baby named Gabrielle in 2003, before the new recommendation for adults came out. She is committed to making sure others don't suffer as her family has. She has since had three wonderful boys, and has been very careful with them, in terms of who sees them and who they were exposed to as infants.

Danielle Romaguera: We had a daughter, Gabrielle "Brie" in January 2003. She came home healthy, was home for a month, then got a cough. At the time, everyone was really concerned about RSV, so we took her to the ER. She tested negative for RSV, so they told us she just had a cold and we should go home. That was a Saturday. By Tuesday, we were back in the pediatrician's office, they gave us a breathing treatment, still told us it was a cold, and sent us back home.

On Wednesday evening, about 1 - 2 AM, we noticed she was having trouble breathing, and we took turns staying up with her all night, even extended her neck so she could breathe. The next morning we went back to the doctor. While we were there, the doctor noticed that she turned blue around the lips during a coughing spell, and she passed out. The doctor sent us to the hospital immediately, which was just down the street. She had several more episodes there, and when they finally got her oxygen level, during a coughing spell, it registered at 24%.

They then airlifted her to a hospital in New Orleans that had a pediatric intensive care unit. And when we got there, the first thing they did is go through a list of things that could possibly be wrong. And the very last thing they told us was pertussis. I asked them what that was, and they said it was whooping cough, but that they never see it anymore. So they went through their long list, and tried to treat things like severe reflux.

She kept having episodes, she would pass out, and then they'd bring her back. She ended up on a ventilator, and then on life support. But before they put her on life support, they brought in a bunch of doctors, and when the pediatric infectious disease doctor walked in, she listened to her cough, and said, "This child has pertussis." They sent off the culture and started treating her with antibiotics.

But by that point, the disease had taken over her body and she was on life support, for approximately thirteen days. She was on a heart and lung machine that did those functions for her so that her body could heal. But then her organs started to shut down, she started to get fluid in her third space -- she looked like the stay puft marshmallow man -- and she leaked fluid from her pores. Then she had a brain bleed -- first on one side of her brain, and then the other. That's when they recommended we take her off life support. Once they took her off life support, she survived for about thirty minutes.

And I know someone asked why we needed the booster. When Bree was born, I didn't have enough antibodies to pass to her -- my vaccine had worn off.

When Brie was in the hospital, there was another little boy who also had pertussis. And at that point, they told us that the CDC had come down, and that they were starting to see outbreaks of pertussis in different parts of the country, and that they were going to need to develop a booster.

Also, when we were in the hospital and before they realized it was pertussis, she hadn't been in an isolation room - she was just in her own room. After they realized it was pertussis, they had to call back every child, every nurse who had been on the floor during the three weeks we were there, and everyone in our own family had to be treated with antibiotics. Because what we found was that a doctor had been infected because he'd been in the room when she coughed, one of the nurses on the flight crew was infected, there were several nurses from the pediatric intensive care, one of the nurses from the neonatal intensive care who just happened to be in the room with her when she coughed -- she came down with pertussis. We used so much antibiotics that they had to call in another truckload for the hospital.

When Brie passed away, she was just 52 days old, and just a few days shy of when she could have received her first DPT vaccine.

We never discovered where she contracted pertussis. She went to two places: Her doctor's office, and her grandmother's house. She only really came in contact with family members. I was a high school teacher before she was born, and I think though we've never confirmed it, that she got it from me.

Christine Vara from Shot of Prevention: Sadly, we're adding more parents for our victims page. You can see an interview with Katie Van Tornhout (http://www.vaccinateyourbaby.org/why/victims-callie-van-tornhout.cfm) on our page.

It seems as thought there are a million cases of pertussis circulating during any given year, but most folks don't realize they have it or they think they have bronchitis so they treat it with the same antibiotics we would have used to treat pertussis, so those cases are never identified, at least not before they've already transmitted it to someone else.

Dr. Brown: It is definitely very underdiagnosed. The best test for whooping cough requires a nose swab, and it's not a very pleasant nose swab either as it goes right to the back of your nose where it attaches to your throat. Because there's been such an upsurge in pertussis, you no longer have to send it to a state lab; lots of private labs are handling the tests. But many people are not tested -- and that means we've underestimated how common this disease is.

Christine Vara: Danielle's story really underscores how many health care workers get infected, and how much preventative care is needed for new mothers, for example Katie Van Tornhouse was never offered the vaccine, nor were our other victims' families. So parents really need to be proactive in requesting these vaccinations.

Open Questions:

Arlene Remick with the National Healthy Mothers Healthy Babies coalition (http://www.hmhb.org): We do have information on whooping cough on our site, but I have found it really, really challenging to describe whooping cough -- so many women absolutely don't know about it. Do you have recommendations for how to communicate with women about this condition?

Dr. Brown: You need to just explain it in English. I hope that's what I did: It may look like a cold; it gets worse, it doesn't get better; and you need to be aware of it -- if you do think you're sick, you need to see a doctor.

Sometimes people get it confuses with croup, but croup is a virus, and even thought it also makes a funny noise when you cough, it's not the same.

Amy Tuteur, Skeptical OB Blog: What about the logistics of getting the vaccination. Who pays for it, how much does it cost?

Dr. Brown: Usually when a recommendation comes out from the CDC, by six to nine months, all insurance companies should be covering it. And the CDC's Tdap recommendation came out more than four years ago.

The recommendation right now is that if you suspect pertussis, you treat it. Texas and California are both experiencing whooping cough outbreaks -- in Texas, the health department has recommended that doctors not wait for the results of the pertussis test -- they want the test done anyhow so they can track the disease, but they also don't want doctors waiting to treat the disease.

We do see whooping cough cycles, they usually happen in three to five years, and the last major outbreak we had was in 2005. So we're due, and it's here. We need to be aware of that.

Shannon Rosa: I'm from Squidalicious.com -- I have a child with autism. I mostly talk to people within the autism community, which is pretty polarized on the vaccine issue, as some of you may know. But, in talking with people in general, what is the strongest shortest message we can get across about the importance of vaccinations?

Amy Pisani: We have a lot of difficulty with the numbers game, but you can't really think about it that way because every single child that contracts one of these disease is a catastrophe, because it's completely preventable.

Also the science has spoken on the issue, really hope that we move back towards science. Children are still dying, and that is in part because of the misinformation that has been given out about autism and vaccines, and I would hate to see any parent with an autistic child then have a child with a vaccine preventable disease.

Dr. Brown: Communication strategies and PR: The message that works for me (and I've tried all of them in my practice) is to say "I wouldn't do anything differently for my child. I protect my kids, and that's what I would do for yours." No one can argue with that -- it's emotion, and it's the truth. I want to protect your child just like I protect mine.

We're such a jaded group of parents -- we have not had to suffer through these vaccine-preventable diseases. Now they make headlines when they happen, because people have never seen them before.

I used to say "Just talk to your own parents, because they've actually lived through these dieases," and they remember being stuck at home during polio outbreaks -- but the problem is that this is the same generation who sits back and watches Oprah and tells their adult kids, "Did you see that thing on Oprah about autism and vaccines?"  so I don't say that anymore, because the grandparents are so influence by the media.

That's the great irony of the success of vaccines, is that people are unfamiliar with the diseases they're meant to prevent.

Danielle Romaguera: When people find out that our daughter passed away from pertussis, often their first reaction is "that doesn't exist anymore" or "how did that happen." When we told my grandparents it was pertussis, they were petrified, because they had lived through outbreaks. So I find that when we tell people out story, then people's eyes open a little bit more.

I have a very good friend who has triplets, and one of her triplets has autism. She vaccinates, because she lived through Brie with my husband and me -- she saw what can happen, and she saw how much my daughter suffered, and I think that a lot of people I come into contact with think pertussis couldn't happen to them, and if it does, it's just a little cold, it's not something that could actually kill their child.

My husband is a professional photographer, and when we were in the hospital with Brie, I told him, "Don't you dare take a picture of her like this," because I really thought we were going home. I thought I'd never want to remember that time of my life. Now, I wish I had pictures, so I could show them to other parents so they could see what can happen. So, in my case, the stories help.

---

**Disclosure: My husband works with Gabriela Quirós, however he had no involvement with her vaccination story.

10.12.2010

41

It's my birthday! I intend to work, go to yoga, work, go to lunch, work, be secretly grateful that Iz injured but did not break her toe and cannot go to soccer practice so we can all go out to dinner, and work. There will be interstitial family time, topped off with a dulce de leche cake. I may sneak off and treat myself to Scott Pilgrim 4 - 7Avengers Disassembled, or New Avengers 1 - 7. Dreamy!

The best birthday gift you can give me: an intelligent comment on my post at Shot of Prevention, as there are 250+ comments as of this writing, many from anti-vaccinationists of very little brain but of great copy-paste/parrot power. Those who can think are using their talents for sarcastic nitpicking and distracting and general thread derailing, since they can't come up with arguments other than "we don't believe your evidence and science." Those of us participating in the conversation are doing fine, keeping the thread on-topic while politely lopping off spiraling conspiracy theory hydra heads -- but more strong clear smart voices would be welcome.

You could also forward my Autism Speaks post on appreciating Leo's hard work to anyone who could use a dose of autism awareness/acceptance/advocacy. The supportive comments -- so lovely --  are a nice contrast from the bile of the Shot of Prevention comments, and a good example of the power of positivity. Ellen of LoveThatMax has what I told her is a "parallel universe" post up today, about rejecting the complacency of acceptance, definitely worth your time.

Or you could take to heart and pass on the following passage from Kim Edwards' fluidly written novel The Memory Keeper's Daughter, which Ellen's post evoked, for me:
Caroline [mother-by-choice of a child with Down syndrome] would never forget those hours, the excitement she'd felt, as if she were waking from a long, slow dream. What would happen, they conjectured, if they simply went on assuming their children would do everything. Perhaps not quickly. Perhaps not by the book. But what if they simply erased those growth and development charts, with their precise, constricting points and curves? What if they kept their expectations but erased the timeline? What harm could it do? Why not try?
Or you could release me from the obligation of watching Parenthood just because it has an autism thread. I veer away from family/relationship dramas; I watch House, Fringe, Glee with the kids, and sometimes SVU (in the background while I work). So unless enough people tell me Parenthood is a revelation, I'm erasing it from the queue and not looking back.

Or you could tell me that I don't look silly in my Comcast Upside interview about Leo & his iPad, now that it's been posted online. LOOK AT THE INTERVIEWER, DUH. I got more comfortable and animated eventually; a good learning experience! And hopefully other folks will find the interview useful.

As always, hope your day is a particularly lovely one, too.

10.11.2010

Music as a Therapeutic Communication Tool: Free 10/21 Presentation

SEPTAR, the Special Education PTA of Redwood City, is hosting a free presentation by speech therapist and musician Laura Allison on Thursday, October 21st, at 7 PM in Redwood City:
Laura's presentation will focus on using music as a therapeutic tool to encourage communication development in children. Music is a unique avenue that can be used to facilitate engagement, social skills, and language development in a fun and natural way.
A article about Laura's incorporation of music into her speech therapy practice:
Meeting Time and Place:
  • Thursday October 21st, 7PM
  • Redwood City School District offices: 750 Bradford Street, Redwood City 94063
SEPTAR provides free babysitting, as well as Spanish translation, coffee, snacks, and excellent conversation with people who get it.

The meeting is open to any interested parents, educators, or professionals -- not just SEPTAR members.

Hope to see you there!

10.09.2010

I Am a Soccer Mom - and It's Awesome!

We are a officially a family of three soccer players! Note that Leo is the only soccer player looking at the camera, hmm.

I have to tell you, this is a big day -- and a testament to my soccer-loving friends' and Seymour's gentle persistence, because I loathe all sports. That might surprise anyone who knows my three sports-loving brothers (two of whom played college baseball, the other whom I suspect would much rather be Baseball Commissioner than a globetrotting multilingual policy effector) -- until you consider that I was dragged to all three brothers' games, for endless years' endless seasons. I didn't have much interest in sports to begin with, and after a few years in which my family seemed to never leave Modjeska Park's fields, I had been successfully conditioned to bolt at the sight of a ball.

Given that background, and also due to a need to have Saturdays remain a calm sacred family space, Iz didn't start soccer until two years ago. Mali started last year. And now Leo's on board. Saturdays are now almost totally unmanageable, logistically -- but it's actually quite awesome.

Leo's having a great time with his AYSO VIP team. We know a lot of the families already, and will be excited to get to know the rest. Here's our boy having a blast. I hope it only gets better.

Leo running on the field!


Leo kicking a goal!

10.08.2010

Speaking of Autism and Bridge Building

I have post on the Autism Speaks blog today: Can You Appreciate My Son's Successes? The essay will be a familiar to you, even if you've only been reading this blog for a short while, as it's a rewrite of the I Wonder if You Can Really See My Son post.

If you've been reading this blog for a while, the fact that I posted at Autism Speaks may shock you -- but not if you've been paying attention lately, and have been reading my articles on BlogHer as well. Last month, I had this to say about my evolving attitude towards Autism Speaks:
Autism Speaks is a controversial organization. They have angered and alienated many members of the autism community. But they are also powerful, entrenched, and well-funded. So, instead of waging war against Autism Speaks, "free range Aspergian" and Look Me in the Eye author John Elder Robison decided to join their board so he could effect change from within:
"There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal."
We've already seen results: Autism Speaks now funds one of my favorite autism community endeavors: Alex Plank's WrongPlanet.net YouTube channel. I can't wait to see what else Mr. Robison helps bring about.
My Autism Speaks article about Leo is not about changing him, or curing him, or seeing past him towards his future -- it is about appreciating him and all his hard work, right at this very moment. I hope that our cheerleading for Leo reaches parents and relatives who haven't encountered loving, accepting attitudes. Autism Speaks recognizes the need for more such positive advocacy, and I am grateful to them for posting my essay (as I am to Jess for orchestrating AS's republish request).

We need more bridges built in our community, but that doesn't mean we need to compromise our beliefs along the way. It makes sense to work with Autism Speaks to spread messages that benefit our entire autism community, just as it makes sense to question them if they misstep.

We need to think big picture. I've been saying that a lot lately. It's why we featured a post on by Holly Robinson Peete on The Thinking Person's Guide to Autism, on autism issues the media continues to overlook. In her essay, Holly spoke about later autism diagnoses among minority children, puberty, adult autistic self-advocacy, etc., -- all issues that need more support, and open discussions. Mentioning her shared concerns with Jenny McCarthy makes Holly's article even more compelling -- she's in no way dissing Ms. McCarthy, but she's pointing out that -- when it comes to our autism community's needs, we need to think bigger, think harder, think more inclusively. We need to try to come together.

Right now.

10.06.2010

Here, There, and Every Which Where

When every day brings five or ten legitimately bloggable incidents, it's challenging to find time for that blogging, not without carving into my already dwindling sleep allotment. Which is the kind of health-averse action I swore, in public, on BlogHer, to start curtailing. So I'll start tomorrow. Right?

Here's what's been going on since the last post on this site:

I want to thank everyone who took the time to comment on my post about how damn hard Leo works when he's in public. Your momentum got the post syndicated on BlogHer! Good work, you.

My essay for The Thinking Person's Guide to Autism on Why My Child With Autism Is Fully Vaccinated elicited some excellent discussions, and was picked up and republished by the Shot of Prevention blog -- where the first commenter has already provided a beautiful example of the "I don't believe your facts, therefore I'm entitled to debate you" mindset. Um, no. Antivaxxers, you need to tighten up your sloppy critical thinking skills if you're going to step into this ring.

As long as I'm writing about The Thinking Person's Guide: our team is still overwhelmed by all the great writing on critical autism topics. And we keep having to delay book publication, because what else is an editorial team to do when its last three submissions are from Susan Etlinger, Holly Robinson Peete, and Kyra Anderson? (Where's your essay, by the way?)

I was on TV last week, on Comcast Home Network's Upside news program, along with a super-knowledgeable SLP from Leo's school; Jen gently suggested that perhaps I could consider taking care of my two-inch roots before going on camera, so I went ahead and dyed my lid myself -- so quickly that my first proper view of the back was on a studio monitor. The video should be up soon, on http://www.facebook.com/UpsideNews.

And since we're chatting TV, Seymour and his crew spent last Friday covering the punch-through of the Devil's Slide bypass tunnel last Friday -- the first new tunnel CalTrans has built in 40 years! Punch through pictures are coming; in the meantime enjoy his team's mini-documentary on the project.

You may get the sense that we have many, many projects going on, and you'd be right. It's all overwhelming my poor partner. So while I was contemplating taking Leo to Disneyland for his 10th birthday like we did for Iz, we will push that off until the Spring, or later. I've heard the Mouse is quite accommodating for kids with autism, and think that Leo would have a great time if we plan carefully and go during a less-attended day. Can you even imagine? A happy Leo Disney day? He hasn't been since before Mali was born.

Two last-week Leo milestones that distracted me from All Done Disneyland:
  1. Leo received his first-ever invitation from a kid I didn't recognize -- a classmate! This happens all the time when sisters start a new school years start, but never ever with Leo. Not before. One more reason to love this wonderful new school of his.
  2. He started soccer! He loves it! Real soccer, AYSO soccer, with a uniform and everything. A VIP team. Therapist V will be accompanying him for now, Seymour may take over depending on the girls' schedules. Because three kids with three constantly shifting soccer schedules? OMG. But I can't wait to post a pic of all three of them in their uniforms! Saturday!
Leo also managed to drop his iPod touch (not iPad!) in the toilet, insta-bricking it. Or so we thought -- until after 24 hours of drying out it spontaneously de-bricked! I had to restore it from backup and retransfer all the audio and video, but aside from a slightly listless battery, it has recovered completely. Whew. The iPad is wonderful, but it doesn't fit in my purse.

Iz managed her own aquatic device attack. Our printer is on the fritz, so she borrowed my thumb drive to take assignments to class, then forgot take said drive out of her pocket. Which none of us realized until the drive's components materialized in pieces, in the wash. But Seymour let them sit, dry out, reassembled them and -- boom! Another recovery. Here's proof: I used the reassembled drive to transfer a scan of Mali's latest potion recipe (left).

And since we're talking chemistry -- we love www.PeriodicVideos.com. It's like Mythbusters for the periodic table -- amusing and educational. It is very gratifying to hear the little children whine, "Mommy can we watch the video for Technetium please because it's the lightest naturally occurring radioactive element?" Though you folks are probably more interested in Mercury:



Iz's favorite school subject is life science, where at the moment they're studying cell biology. She keeps asking me to help come up with cell function analogies, but is starting to outpace me -- I don't have an analogy for endoplasmic reticulum, do you? Her teacher is slyly tailoring her material for her pubescent girl students; Iz has come home wide-eyed about the dangers of consuming too few calories, as her mitochondria need fuel to produce ATP. And she has to eat enough fat or her cell walls, which are composed of lipids, will collapse and she'll turn into a big puddle.

Iz has four teachers; Mali has two: One each for Spanish and English. I talk with both of Mali's teachers every single day after school, because our button-pusher is still seeing how far she can go with them, and as long as her defiant behavior persists, the teachers and I need team strategies. Part of Mali's challenge is being a very young first grader with a November birthday. Part of it is increased expectations -- first graders are expected to work harder than kindergartners, and she really liked the creative cruising along of kindergarten. Part of it is not being able to shift her great big personality into compliant classroom mode. But it's still early in the year, plus both teachers are experienced enough to wait her out and let her break herself in. For now.

Mali's an outspoken girl. And we're working on that, in helping her figure out the distinction between assertive and rude. It's a fine line to walk when one is five years old. An example: I took Mali, Iz, and their cousins Danielle & Elise to see one of their heroes, the irrepressible Jenni Holm (Baby Mouse) at a local book store. Jenni did a series of drawings for some of the kids in the audience. Mali of course answered every single question Jenni asked each kid whether directed at the audience or not. Bu when it was Mali's turn to step up to the easel, and another girl answered for her, Mali turned around, assumed the regal, snappy pose of a drag queen, and declared, "Excuse me, it's MY turn right now."

Which was not terribly polite! But she neither insulted the girl, nor did she tackle her or in any other way cause her physical harm -- actions which would have justified the reactions of all the perfect little parents of the perfect little children -- as a group, they gasped so loudly that I was surprised any oxygen was left in the room.  Different universe; I guess my context for bad behavior is a bit different than theirs must be.

I had Mali quietly apologize to the girl for being cross, but those parents? I met every single one of their eyes with a calm, firm detemined half-smile. And if I had deigned to talk with them, I would have told them that the best way to deal with kids like Mali is to ignore the behavior you don't like, and reinforce the behavior you do, and that their group gasp of horror was near-narcotic for our little attention seeker -- not helpful, uptight people.

But she got to meet Jenni, as did we, which was worth the public stink eye. Jenni rocks.

What else? Mali wants more friends with geography names. Pregnant ladies, do you hear me? She wants you to name your babies Australia, New Zealand, or Pakistan.


Winding down ... um, I wrote another essay for BlogHer today, about how Iz likes crappy pop music and it pains me, and I'm not sure what to do but perhaps you could recommend a band or two?

Oh look, there's Leo's bus. Until next time!

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