Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

And here’s autism on a list of CNN’s top 10 health issues of 2008, with more than a nod to the vaccine issue …… and from Mark Miller’s special needs blog, his list of the “top 10 moments” in disability policy and politics.

Your top 10 of 2008?

The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008?

Saying “a lot happened” in the past two weeks kind of seems like an understatement.

• The Search for Certainty (or, why we’re going to the dentist at 3.15pm)
  An emergency dentist visit for Charlie prompts me to think about why parents so often try to find medical reasons for why something’s going on.
• David Kirby exonerates thimerosal
  Maybe not exactly but the day may be coming……
• Today Show Today on Autism and Vaccines
  I’m briefly interviewed on a feature about vaccines and Dr. Paul Offit.
• A “Crusade Against Autism”—-To What End?
  Do we really need such a “crusade”? . Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good.
• The Great Now What
  Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
• Positively Autistic on CBC News
  A recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.”
• If It’s Raining, There’s More Autism?
  Another study from Michael Waldman, who wrote an earlier paper about TV causing autism.
• Pop Pop Redux
  A post about the Mugen Pop Pop Blueberry written on Election Night,
• What does it mean to lose an autism diagnosis?
  Does losing a diagnosis mean that one is “cured” of autism?
• Sensory Differences: Research at IMFAR 2008
  Should sensory processing differences be part of the criteria for autism?
• Robert Kennedy, Jr., and the EPA?
  RFK Jr. is under consideration by President-Elect Barack Obama to head the EPA?—Not good if you care about science.
• “Strange” Play As a Marker for Autism in Infants?
  Unusual use of toys in infancy a clue to later autism, according to a stuy published in the October issue of Autism, the journal of the National Autistic Society.
• Adolescence: Not easy, but no need to end it
  Newt Gingrich argues that we should do away with adolescence.
• New Theory About Autism and Genetics
  A new theory argues that arents’ genes are “in competition.”
• Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
  Rod Welford, the education minister of Queensland (Australia), attributes the rise in autism prevalence in his state to parents in search of more services for their children—-not.
• Looks Like the Special Needs Mommy Wars Aren’t Over
  is Sarah Palin a potential leader for working mothers of special needs children?
• The Value of Money (the real stuff)
  Charlie learns to count money in the age of the ATM card.

According to the November 15th Slate, Barack Obama needs to choose a cabinet of really smart genius types—that is, with those who are “brilliant—albeit prickly, semi-autistic, and egomaniacal—thinkers”:

The issue starts at the Treasury Department, where the best choice would be former Clinton Treasury Secretary Lawrence Summers. Summers is the outstanding international economist of his generation, someone whose brilliance is immediately evident in any conversation. …………….

Summers can also be arrogant and politically incorrect. He sometimes does a poor job hiding his contempt for lesser intellects and loves to play the intellectual provocateur. Socially, he can be a bit autistic. But these are the defects of a superior mind, and they are a small price to pay for getting the person most likely to maximize our chances of avoiding a full-scale global depression.
…….
For Education, [Obama] might choose Joel Klein, the chancellor of the New York City school system. Klein has not gone through life making friends, but he has shown himself an unusually shrewd and committed thinker about educational management and reform. Better yet, what about getting Bill Gates to tackle the problem?

If the President-elect takes up Slate’s suggestions, get ready for quips about the genius bar on the Potomac………..

So, now that “a certain event last week has come and gone,” a question courtesy of Tina Brown in The Daily Beast (and thanks to Working Dad by Paul Nyhan):

Is Sarah Palin a potential leader for working moms?

And, more particularly and pertaining more to this blog, is she a leader—a model—for special needs mothers?

According to Brown:

…..[Palin] could play a valuable leadership role—right now—by being honest about and sharing what she really does know about: combining healthy ambition with mothering five kids. Confronting the pain she must have felt—and, even I dare to suggest, the guilt she won’t allow is there—at her own parental oversight when her teenage daughter got pregnant. Struggling with that other decision she has also blown off as an easy call: to continue with her own late-in-life pregnancy when she found she would give birth to a Down syndrome baby. (And it was a decision, “pro-life” platitudes notwithstanding.)

Looks like they’ll be some more skirmishes ahead in the Special Needs Mommy Wars. Prior to the election, Palin said that she’d be an advocate for “families who have special needs and children with special needs”—–I guess we shall see.

On the edge of your seat watching the election results? Need a little distraction of a sensory type to keep your fingers busy with something else besides hitting the refresh button on your computer to see who’s in the lead? Bubble wrap is good stuff for the sensory-sensitive and then there’s the Mugen Pop Pop Blueberry, a miniature version of those plastic popping sheets. But can it replicate the real bubble wrap experience? And would the Mugen be a good fidget to clip onto Charlie’s bookbag?

Excuse me, I have to go back to checking who’s got the most electoral votes……..

Yesterday ABC News reported on the difficulty of diagnosis and featured Jason Ross. Today’s ABC New looks at life after an autism diagnosis and interviews three mothers of autistic children to describe how families adjust after learning that a child is autistic. “‘There isn’t one stream that families find themselves in where they get carried along…….Life after diagnosis is normally a haphazard unfolding and everything is learning as you go,’” Dr. Jon Markey, a child psychiatrist at William Beaumont Hospitals is quoted as saying. Families—as Judith Ursitti, Kim Stagliano, and Jennifer Wood note—too experience “physical, emotional and financial meltdowns”; marriages are strained (one mother interviewed is divorced); parents become advocates.

“Scared, patriotic, worried, determined, tired, depressed, upset, anxious, terrified, hopeful; hopeful, happy, ready, tired, relieved, and, of course, nervous and anxious”—-that’s how the New York Times is reporting that voters in the US are feeling while awaiting results in the presidential election. At the risk of comparing our family matters to the political climate of the nation, I’d say that may of those words describe how I felt after Charlie was diagnosed and, most of all, “terrified” (because I had no idea what lay ahead) and “relieved” (because there was a way to talk about “what” Charlie “had”).

The diagnosis was just the start of a huge change in all lives and while it hasn’t been easy or without tears, stress and sorrow, life with Charlie—so different, so unexpected—has been, too, so good.

Soon as Charlie got on the bus, Jim and I went to vote..

“Special”—as in “special needs”: It’s a term used primarily (exclusively?) in regard to children. Sometimes, just saying “special children” means the same thing. But one wouldn’t use the word to refer to adults with disabilities.

Consider this example: At at an October 30th rally in Rush Limbaugh’s hometown of Cape Girardeau, Missouri, McCain-Palin campaign representative Senator Kit Bond (R-Mo) mocked Presidential candidate Senator Barak Obama for saying that he’s looking to nominate judges who empathize with “the disabled.” Sen. Bond was joining Vice Presidential candidate Sarah Palin at the rally. As noted in a press release from ADA Watch and the National Coalition for Disability Rights:

“It’s Halloween and it seems that Sarah Palin’s mask of support for people with ‘special needs’ is slipping. Despite past pandering to people with disabilities, McCain-Palin are actually opposed to vital disability legislation like the Community Choice Act and they want to appoint judges who will further roll back the civil rights protections of the Americans with Disabilities Act,” declared NCDR’s founder and president, Jim Ward.

NPR’s Nina Totenberg has reported that McCain-Palin’s and conservatives’ “most oft-mentioned prospects” for nomination to the Supreme Court include Ohio Judge Jeffrey Sutton. Sutton was opposed by hundreds of disability organizations when he was nominated by President Bush after successfully weakening the ADA with states’ rights arguments. As a sitting judge, he has recently supported the execution of criminals with developmental disabilities and has undermined the Help America Vote Act(HAVA).

Disability rights advocates are further incensed that the McCain-Palin campaign has reframed this civil rights struggle, one founded in concepts of equality, dignity and self-respect, as an issue of “special needs.”

Disability rights advocate, Steve Gold states, “Yes, we need support services. Yes, we need inclusive education. Yes, we need integrated employment. Yes, we need equal rights. This not ‘special.’ These needs are based on us, people with disabilities, equal members of our communities. We are not inspirational nor are we ‘special.’ We are PROUD PEOPLE WITH DISABILITIES who should push back when anyone describes us as anything but equal members of our communities.”

More about what was said at the rally at FOX News.

“Disabled.” “Special.” I know it’s just a matter of words—–and being the mother of a disabled son, and a son for whom talking and communication aren’t easy, I’ve become hyper-aware of how much words matter, and what they say and what they don’t.

So maybe it had to do with finding myself driving through a most unexpected (in New Jersey) October snowfall to take Charlie to a medical appointment (the dentist, to be more precise) on a cold mid-afternoon on Tuesday—-but as I glanced at him in the rear view mirror, a strong sense of déja-vu came into my mind. I was driving down a wide avenue on a snowy afternoon, gray sky, and strapped in the middle of the backseat, in his carseat, was my little boy and there was something wrong with or inside of him and no one seemed to know what, or to be able to say what, and not the kindly pediatrician we’d just seen for the nth time……

I was remembering the late late fall days of 1998. We were living in St. Paul, Minnesota, then (I was a newly hired classics professor here) and snow (flurries; storms) occurred regularly, and the days were rapidly shortening and the sky was gray and cold. The doctor talked about how Charlie was a likely candidate for ear tube surgery and how, if he didn’t start talking after that, “we’d have to see.”

If it were now—-when everybody, at least every parent of babies and young children—seems to have heard of autism (though not necessarily to know what it is), and when there are more tests to predict an autism diagnosis in infants, I think Charlie would have been diagnosed as a baby. At the very least, the “minor gross motor delay” that he was documented as having at the age of 10 months—he’d just started to roll over, wasn’t yet crawling or really pulling himself up, didn’t seem interested in moving from whatever spot on the floor where he found himself—-would probably have said to a pediatrician, some things need looking into. (Instead, Charlie’s then-pediatrician blamed me for catering too much to Charlie and so hindering his motor development.)

Everything was mystery and fog then, and a lot of blurry, and really intense, anxiety, I recall. It was hardly “easy” to learn that Charlie had autism, but it was, in many ways, a huge relief, and we started right in to learn about what we might do to help Charlie.

Flash forward to yesterday afternoon. Our low-slung green Saturn’s been long replaced by a black stationwagon and the little toddler in the car seat is now so tall he can’t stretch out all the way in the back seat. While Charlie had had a quite easy time at his last check-up in August, I always feel traces of nervousness taking him to the dentist, as older memories of really awful visits (four adults struggling to keep a wailing boy in the dentist chair, some years ago) are very fresh in my mind.

A hygienist led us to a room to a side and turned on a video of Disney’s Tarzan. Charlie got right into the chair and the whole time that he was sitting in it and the dentist and hygienist were requesting that he open his mouth and keep his hands down and poking in mirrors and other dental tools: For all this time, Charlie was at ease. The only time he got really agitated was when (while we waited for the dentist to examine him) the credits of Tarzan came on the screen. Charlie talked about Barney really loudly and anxiously and when I asked him if I should turn off the video, he cried out, “yes.” He kept poking at the buttons of the dentist’s tools and running his hand on the chair’s handles, both while we waited and when the dentist paused to talk to me. I asked if the seat could be raised and the dentist pushed a button: Another smile from Charlie.

Charlie had no cavities or sores or anything. Some new teeth (including a molar) are coming in.

And, while Charlie was getting his teeth examined, I was standing a foot away from the chair, holding onto his two Leapsters. He knew what to do, and he did it, thanks to a couple of years of practicing with his home therapists.

Jim teaches late in the Bronx on Tuesdays so it was Charlie and me for the rest of the day. We went to the pharmacy to pick up some things (including two sodas); practiced cello; and went swimming. Charlie was so excited to be at the pool that he ran towards the bleachers and ended up howling on one knee. I got him to sit down: No bleeding (thank goodness) and then he pulled off his shirt and jumped into the pool and good thing there was almost no one besides us in it, as he splashed quite a lot of water around with powerful kicks. After dinner, I asked Charlie to get out the dustbuster and he did, and then sat at the kitchen table to do three homework sheets. A shower and Charlie announced he wanted “bedtime” at quarter after 9.
Arguments are often made—as in this recent Washington Times op-ed by two fathers of autistic children, Michael O’Hanlon and Stuart Spelman—about why it’s first of all necessary to provide intensive educational (ABA in particular) teaching to autistic children as soon as possible, in the hope that they may “wind up mainstreamed in school” and have their “prospects for graduating from school, holding a job and having at least some real friendships” greatly increased, and not be such a “burden” to society as adults.

But any “agenda for autism” ought, I think, to take more of a long view, and be more hopeful about the long view. My son’s never been mainstreamed in school; we nonetheless consider his early years of education extremely beneficial. School graduation, a job, friendships; all these are up in the air. Charlie may well be more than adequately trained for more than a few jobs, but will there be employers who’d like to hire him? Will an employer—will we, as a society—be able to accept him as an individual who’s “different” and change ourselves, to make things better for him and others with his disability?

Charlie’s going to have a lot of needs as an adult, and he’s most likely going to need a lot of support, but I don’t think those are grounds for seeing him as a “burden.” It’s a chance for us to envision a communal response for those who need the support and the understanding. And without enough of these, and the belief that a child can do it—can sit in a dentist chair all on his own and smile about it—-things you never thought you’d see can become not only true, but part of the list of things you do any day, every day.