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.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

Am off to visit the cemetery where my grandfather, Yeh Yeh, great-grandmother, Bak Bak, great aunt, another great grandmother, a very good friend of the family, and many other great relatives are, and then out to lunch in Chinatown with cousins, aunts, uncles and (hopefully, if she’s up to it), my grandmother, Ngin Ngin, who’s 104. It’s always good to be with family—today’s St. Petersburg Times describes the bond between 12-year-old twins, Anthony and Ryan Moran. Ryan is autistic and Anthony is his constant companion:

Most of the time it’s good having a twin, Anthony insists. You always have someone to talk to, even if the other person can’t really talk back.

Ryan understands everything. “Only sometimes he doesn’t care what you’re saying, so he walks away.” And he can speak “when he wants to,” Anthony said. “One time when we were in the bathtub he said the whole pledge to the flag.”

Ryan will catch a ball, but he won’t throw it back. He’ll rebound your basketball but won’t shoot it. In Little League Challenger baseball, he’ll run the bases — but only if Anthony runs with him. “He’s always thinking about other things, so he can’t concentrate,” Anthony said. “It must be weird to be in his world.”

“Weird” maybe, but these are two brothers who are very clearly connected, however much one speaks and one is not able to.

A sad sad story from New York—7-year-old Chelsea Maldonado fell from a fifth-story window of her parents’ Bronx apartment on Christmas Eve, the New York Daily News reports—-reminds me of what I’m grateful for. Chelsea was autistic, blind in one eye, and bound to a wheelchair. Thinking of her family, and many families—-the Morans in Florida and many many more—-hope you’re all warm and safe and together today.

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

With legislation for insurance for “autism treatment” under consideration around the country (in Virginia, in Florida, in Illinois), a question: The “treatment” called for is principally in the form of Applied Behavior Analysis (ABA). What other treatments might you wish to see covered and how might they be justified as the sort of treatment and therapy that health insurance must provide for?

An editorial in today’s Palm Beach Post reports that Alex Barton’s mother is hopeful that a request for private schooling will be settled soon. A “bigger problem” is also noted:

The bigger problem, as public schools have to deal with more problems with less money, will be seeing that all children get the testing and help that they need - without wasting a lot of time. If Alex had received help more quickly, the Survivor scandal might never have happened.

If training about autism and special needs kids in the classroom had been provided……… if there’d been more and real understanding of what it’s really like to have Asperger’s Syndrome……. if……………

1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case. Today’s Guardian reports that health officials are seriously concerned about a possible epidemic of measles of between 30,000 - 100,000 cases. Measles has been spreading more easily because of the “relatively low uptake” of the MMR vaccine in the past decade:

The fall in uptake of MMR was triggered by now-discredited research claiming there was a link between the jab and autism.

Health officials in the UK are planning a mass vaccination program in some areas. The Daily Mail quotes Guy Hayhurst, consultant in public health at a local Primary Care Trust, as saying that they have identified 10,534 children who have no record of full MMR immunization.

Here in the US, measles cases are at their highest level in a decade.

It’s starting to seem more than unfortunate and regrettable that the theory of a connection between the MMR vaccine and autism—the so-called “leaky gut theory“—was proposed back in 1998 by Dr. Andrew Wakefield.

Back in May, 5-year-old Alex Barton was voted out of his kindergarten class by his classmates. His teacher, Wendy Portillo, had asked the students to vote on whether they wanted Alex to remain. Alex’s mother, Melissa Barton, removed Alex from the school following this incident, which received a great deal of attention in the national media. Portillo has been suspended for a year without pay and is asking that her her case be reviewed by the state Division of Administrative Hearings. Alex is now being taught at home and Melissa Barton is requesting that the St. Lucie County School District pay for private school, psychological testing and counseling for him, as reported in today’s Palm Beach Post:

Barton filed a complaint with the district in late August seeking an administrative hearing. In the complaint, which she released to the media this week, Barton outlined the incident that occurred last May in Wendy Portillo’s kindergarten class.

The complaint also says that school officials failed to evaluate Alex for autism within the time frame specified by law - he was privately diagnosed with Asperger’s syndrome, a high-functioning form of autism, after the incident - and didn’t establish an individual educational program as required by federal law.

Barton is also seeking for the school district to pay legal fees and compensatory and punitive damages for emotional suffering.

Reviewing all this, one can’t help thinking how none of this had to happen if there’d been a little more understanding that day in May.

Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year, according to the Naples News.

More commentary at Aspie Web.

In Collier County, Florida, parents have accused the school district of having a “carefully orchestrated strategy to keep special needs students out of the district.” Yesterday’s WINK news reports that the Federal Department of Education’s Office of Civil Rights has sent a letter to the Collier School District recommending changes as to how the district informs parents of their rights under the Americans with Disabilities Act (here’s a PDF file of that latter). WINK news describes what happened to teenager Derek Hughes, who was diagnosed with autism and who also started to have seizures while a middle school student in the Collier School District. Then:

“His seizure activity resulted in an ER visit because no one in school was trained properly to deal with a seizure,” his dad, Bill Hughes, told CALL FOR ACTION.

After the seizure, his parents took him to a neurologist at the Dan Marino Center in Miami.

Derek’s neurologist recommended the district change Derek’s IEP to include requiring a full-time trained nurse stationed at the school (the school only had a part-time nurse). It also recommended allowing Derek to bring his service dog to school.

Despite letter… after letter… after letter from the Derek’s family attorney to the district - nothing changed.

Bill Hughes told CALL FOR ACTION, “The district refused to change Derek’s IEP. They refused to acknowledge the epilepsy diagnosis. The district even refused to recognize on Derek’s IEP he had a seizure even at school.

In January 2006, Derek’s dad requested an independent hearing under the American’s with Disabilities Act. Federal law requires the district schedule the hearing within 45 days of the request.

“We sit here two and a half years later and not one single element of our sons’ case has ever been evaluated and ruled on,” said Hughes.

Hughes also complained to the Federal Department of Education Office of Civil Rights.

The Hughes family has also filed a federal lawsuit against the school district; other families have also filed complaints against the district. The Hughes family has relocated to Pennsylvania, where Derek is allowed to have a service dog and a sign language interpreter, with his father commuting from Florida on the weekends.

With the current financial crisis in the US other families and I have been talking (worrying) about what this might mean as far as our school district’s budget and how we can ensure that our children receive an appropriate education right here in our own town. We’ve moved several times for the sake of Charlie’s education—-I think this time we’re planning to stay put and make things as good for Charlie and kids like him as we can.

(Preferably without taking legal action.)