Silicon Valley Moms Blog

The Vaccination Question has No Easy Answers

Every day I receive reports in my email box about various autism biomed treatments or the latest cases involving vaccine-injury. CBS Evening News has an exclusive story on the second round of cases that went to court today alleging a causal relationship between child vaccination and autism cases. Meanwhile, the recent outbreak of whooping cough (pertussis) at the East Bay Waldorf School has people chattering about vaccines from a different perspective.

I usually stay silent about the various debates because I don't see a clear answer and because these issues are too close for comfort. I've experienced these questions as a parent and studied neuropharmacology, immunology, and other such subjects as a graduate student. I've been brushed off as a "desperate mother," yet have seen firsthand how environmental stimuli can play a role in characteristics that fall on the autistic spectrum.

Before I became a mother of a child diagnosed with PDD-nos, I was respected as someone with two Ivy-league degrees, one of them a Masters of Medical Science. But once my son came along, since I put him on the Feingold Diet and questioned the vaccine schedule, I became an uneducated fool in the eyes of many medical professionals.

I'll have the champagne, the halibut...and a label maker

Yesterday I awoke to the following:

Isaac: I want to play on the computer!

J [stage whisper]:  Okay, Bean, go wish your Mommy a happy Mother's Day, then you can play on the computer.
[poundpoundpoundpoundpound down the hall]

Isaac: Happy Mother's Day, Mommy!

Me: Thank you sweetie! Can I have a hug?

Isaac: No.  [Hugs me].
[poundpoundpoundpoundpound back down the hall]

Isaac: Step one, say Happy Mother's Day to Mommy!  Step two, play on the computer!

I fell back to sleep until 9:40.  Bliss.

Like Moths to Fame?

What do you get when dozens of moms who have recovered their kids from autism are at a dinner with celebrities . . .  in the midst of an historic battle over light brown apple moth (LBAM) aerial spraying?  ACTIVISTS! I and these moms attended a comedy show and auction on Friday night to benefit San Francisco autism organizations, such as The Ryder Foundation. We worked the celebs in the room as best we could.

These moms are not crazy "fringe" moms. Among the eight in our group that night, were five who founded non-profit organizations. These are intelligent moms whose research led them to believe autism is indeed treatable. They have the recovered kids to prove it. They know not to let the California Department of Agriculture pull the proverbial wool over their eyes without an independent environmental impact report on CheckMate, the LBAM spray.

These moms have experience going against the grain. Parents who choose biomedical treatments are constantly on guard from those who don't know the strict program, which can include a wheat and dairy free diet and sometimes heavy metal chelation. According to the Autism Research Institute treatment ratings, two-thirds of parents who have tried biomedical interventions say it helped their child.

Getting things fun

Right before Isaac was formally diagnosed, I was invited to a going-away party for a wonderful Floortime therapist we'd met. Everyone there was very kind, but I really felt like the newbie: surrounded by mothers who openly referred to their kids as "autistic," I cringed every time I heard the word.

At a certain point, someone kindly asked to see a photo of my son. I pulled it out of my purse, and she murmured how handsome he was. So I asked to see a picture of hers, and she produced a photo of a very cute five- or six-year-old boy grinning through a cascade of golden curls. "Wow, his hair is amazing," I said, smiling as I handed it back to her. "Yeah," she answered ruefully, "We have to use everything we've got." I left feeling unbelievably depressed.

When it comes to play, kids on the autism spectrum can have a hard time. The sensory demands, the social cues, the innate understanding of how a toy is supposed to be used or a game to be played--can be a challenge for kids who perceive the world differently from us. But over time, I've learned how to listen (okay, not always, but work with me here) and keep things moving. And it helps that Isaac is a lot more relaxed, regulated and engaged as he's grown older. At almost five, he's finally opening himself up to play.

The Private School Snob Celebrates Public Education

I am a card-carrying private-school snob. Those "cards" include two framed degrees from Ivy League schools and a "fact card" for my independent high-school alma mater for which until recently I was on the Board of Trustees.  I appreciate the flexibility and forward-thinking that independent schools can provide, particularly as released from the standardized testing and expectation that all students must learn in the same way. In the current public school system, the aim is to address weaknesses rather than to celebrate strengths.

One mission of my high school alma mater is to be a private school "with a public purpose." The outcome of this goal has been reflected in founding the Bay Area Teachers Center in partnership with San Francisco State University, and fostering the development of Aim High Academy, a public SF school which grew out of Aim High's summer program. Our goal hasn't been to be elitist, although I understand how independent schools can become such. I recall one interesting evening when I sat with friends from Book Club who questioned the need to go to college, much less to obtain an Ivy League degree. It certainly made me think.

But considering private school for college is a much different question than considering it for high school or elementary school, and yet, it is the early years that are the most critical. With this in mind, I was particularly concerned about getting it "right" for my son.

Autism: Are you aware yet?

April 1 marks the first day of Autism Awareness Month, and the media are ablaze with story after story after OpEd  after story about autism's mysteries, controversies and neurological underpinnings.  CNN has been particularly active, launching a series this month entitled Autism: Unraveling the Mystery.  And there's a lot to unravel, with no assurance that you will end up with anything more than a crushing headache and a big pile of yarn in your lap. 

As someone who writes about autism almost daily, I am struck by the themes that emerge when you look at the news coverage as a whole.  CNN, who clearly made an editorial commitment to cover autism in depth this month, is taking an all-encompassing viewpoint, spanning the medical, scientific, cultural, familial and social implications of the disorder, with commentary, links and video in addition to straight news reporting.  It's cogent and thorough. 

It's also a fascinating time capsule into the current state of our cultural attitudes and assumptions about autism. 

What Makes A Bully?

...cross posted from our sister site, Chicago Moms Blog.

So far, my son’s weathered taunts of “nerd,” “retard” and other names in junior high.  In chorus class, the kid who was tossing pencils at the back of his head was moved to the other side of the room. 

Nothing can stoke a parent’s passion faster than a bully.  My husband demands the kid’s name and says he’ll personally visit the kids’ parents if it doesn’t stop.  After I hose down my husband with ice water, (just kidding), I rehearse bullying scenarios with my son, providing ideas on how he can defend himself.   

My son has Asperger’s.  He’s brainy, wears glasses and resembles a young John Denver from “Oh, God!”  Except there’s no cigar-chomping George Burns who can protect him in the cafeteria. 

Click Here to continue reading this post on Chicago Moms Blog.....

Education and the CA Budget: A $50 Cream Puff

On Saturday evening, I attended our school's fundraising auction. Amidst the festive and sparkling environment, school parents dropped big bucks. Tables bid on desserts for exorbitant amounts and individuals took away luxury vacations for the true cost of their child's education and then some. In the middle of it all, the principal gregariously worked the crowd in his ivory leisure suit and Panama hat.

I won at "wine toss," but rather than taking home bottles of Silver Oak, like some folks, I ended up with a Gallo. I bought an amazing portrait of the Cat (pictured sample-size at left) and bid on a bunch of things that I didn't win. I enjoyed free booze and fun conversation. But the real entertainment was seeing how much money people were willing to spend for our kids.

California Senate Introduces Two Autism-Related Bills

My seven year old son has been in five different schools in his short lifetime. He was asked to leave one preschool program, but then did fine at another. He was expelled from a private Kindergarten. He "graduated" from a public Kindergarten class, but around this time last year, his teacher strongly recommended we find another school for him. We did (by moving in this horrific real estate market), and he is now in first grade in our "Dream District."

Our case is not unique. Many families must work hard to find the appropriate educational and social environment for their child. The school-hopping has taught me first-hand that the right environment can mean everything for a child. My son was essentially two different people at the two different kindergartens. And he has improved even more in his new school, surrounded by people who appreciate his strengths and assist him in areas such as social skills. When his teacher has questions about a particular behavior, we work together to find a way to address it in a productive way. I get happy butterflies when I step on campus because I feel that my son is in a supportive environment.

Imagine if suddenly we were told he could no longer attend the school that is serving him so well?

Blame it on the Thunder Burp

Earlier this week, NPR broadcast a story by Alix Spiegel on the relationship between imaginative play and self-regulation in children. The theory, based on work by Howard Chudacoff, a cultural historian at Brown University, holds that the nature of play has changed dramatically in the last century, from imaginative, fluid and active to more narrow, rule-based and focused on toys. "It's interesting to me that when we talk about play today, the first thing that comes to mind are toys," says Chudacoff. "Whereas when I would think of play in the 19th century, I would think of activity rather than an object."

Chudacoff points out a number of other factors that have dramatically altered the nature of play in the last century: the growing concern for safety, and an increasing thirst for achievement among the middle class.  He argues that this decrease in imaginative, unstructured play correlates to a reduction in children's ability to self-regulate, which is critical to emotional development and, yes, success. 

Those of us who have children with special needs or learning differences have often been sensitized to the importance of play.  In fact, "Delays or abnormal functioning in...symbolic and imaginative play" is one of the diagnostic criteria for autism, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), a tome with which I am all too familiar.