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.

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.

While I’m contemplating where to locate twinkling bike lights and as it’s the holiday season, I thought I’d make a confession:

Charlie’s never sat on Santa Claus’s lap.

We have tried, when he was much younger and we found ourselves in a mall in New Jersey, the land of malls and mallrats. Or maybe we had gone to the mall that day for that sole purpose. Something about “mall air” and the deliberately smiling velvet-clad elves/Santa’s helpers, and the line of overly excited, bored, or wandering about children, led Jim to say, quite wisely: “Let’s get out of here.”

We never really brought up the matter after that. Charlie was around 4 or 5 then and he wasn’t too inclined to sit on anyone’s lap for too long, and we worried about what if he got upset and back-arched while Santa was a ho-ho-ho-ing, and we found ourselves handed a picture of forced smile Santa and not smiling Charlie, for a not-cheap price. And so we kept sending out photo cards with Charlie in random candids, usually shot outside (and often from the summer, by the ocean).

On once relaying our guess-we-gave-up-on-the-Santa-thing, I was immediately reminded by my mom of the response that both my sister and I had while sitting on the lap, or even getting near, Jolly Old St. Nick. “You cried,” my mom said. And, indeed, there’s nary a photo of me on Santa’s lap in the rather extensive photo and slide archives in my parents’ house.

Which brings to me to a quandary that’s a sort of corollary: The whole matter of telling Charlie about the guy in the red suit who comes down the chimney and, for that matter, the bunny that brings the basket full of Easter eggs, and the fairy who takes away your teeth and brings coins……while we’ve talked about all these to Charlie at the appropriate holidays, as of a couple of years ago, we ceased to. Charlie never developed any particular interest in any of those make-believe characters. He’s never been one for stuffed animals (aside from the says-100-things Barney he used to have) and his main concern regarding his teeth was getting that loose hanging thing out of his mouth.

Part of me feels that maybe we didn’t try enough to explain about Santa Claus et al., and the other part of me sends out a reminder: You would have had to reveal that Santa = Dad and Mom anyways.

What Charlie most seems to be interested in during the holidays is seeing my parents and staying in their house at the bottom of a hill in Oakland, California, and eating in a lot of Chinese restaurants with food-laden lazy Susans swinging ’round. I have a rather large extended family who likes to get together and, as the three of us usually only visit once a year (Charlie and I did go out to California in June, but it was a very teary visit as Charlie really missed Jim), Christmas has become a time to connect and reconnect with my relatives (I haven’t lived in California for over twenty years). As it’s rather likely that we may end up in California, we try to pack in a lot in each visit, and our time on the west coast with Charlie—it means a lot to show him and Jim all the places (Chinatown, where my grandmother Ngin-Ngin still lives; the cemetery where Yeh Yeh, my grandfather, and many other relatives are buried) that made up my world as a girl.

Yes, Santa will just have to wait.

Thanks to all who sent the kind birthday regards. My birthday coincided with the last day of classes at my college and the morning was packed with review sessions prior to exams and a couple of phone calls about matters that needed to be figured out by today (meaning Wednesday, i.e., yesterday) and some missing files of a rather important nature. (Two found, one still missing.) At 11am a student came in to talk about her graduate school applications; she had a bag lined in red tissue paper (a little soggy from the rain) and gave it to me. Inside was a hardcover version of my Latin textbook.

Since I first taught my student Elementary Latin four years ago, I’ve been through three or four paperback versions of the book. The cover inevitably gets ripped off and the book’s spine splits, and the corners get ruffled and ripped, and a couple of pages fall out and become occasional bookmarks. So having a much more durable hardback book should help. But getting one was something I just would never have done on my own. I have plenty of (worn and weary) copies of the textbook and I know some students struggle just to pay for their book. I can’t say how grateful I felt that my student had noted all this, and helped me out.

I’ve worked for most of Charlie’s life and while the demands of a job certainly make things more harried and add to the stress, I’ve also gained a lot of support from mycolleagues and students. Jim and I are in a constant conversation about Charlie and autism and much else; we both also agree that having “other interests” (here’s a longstanding one of Jim’s) and reaching out to others, both those who have a connection to autism and those who don’t, has been essential.

Jim’s schedule changed much in the past few years and he can be home more, but when we first moved back to New Jersey in 2001 with half of a job for the three of us, he had to work much longer hours, plus we lived in central New Jersey and Jim was working in the Bronx. Charlie and I spent a lot of time with just the two of us, and those were the days when I couldn’t go grocery shopping with him. Soon as I turned my back, Charlie’d be opening a container of something and eating. I initially started blogging in June 2005 on a hot June day when Charlie was floundering in a summer school program (that was not at all “appropriate“) and I was scheming about how we were going to pass a long afternoon when even the playground was off limits, the slides scorching hot under the sun.

The internet’s a rich, unregulated, and sprawling source of information, about autism and therapies and treatments and who knows what. I’ve found it to be as much a source of community, especially as a parent isolated by circumstances and grateful for support and help from someone out there, anywhere. First there was email for me and then blogging and now there’s been the rise of all the “social networking sites.”

Ive been very excited that one of my sister mom-bloggers, Bonnie Sayers, has organized Autism Twitter Day for next Tuesday, December 16th. Here’s what it’s about (via Left Brain/Right Brain; also see the autism group on Twitter, via I Speak of Dreams):

Autism Twitter Day – Tuesday, Dec 16th pacific standard time – 9AM, 12:30 PM and 8 PM. Prizes will be given out and a panel will be available with information and to answer questions.

This is open to twitter members, specifically those who are members of the autism community, whether it be a parent, sibling or relative. If you are on the spectrum you are welcome to take part. Most of the prizes are geared to children and young adults with autism or asperger syndrome.

The hashtag to be used for autism twitter day is #ASD. This means when you post a tweet that day which is on the topic of autism – positive autism awareness, please use the hashtag, either in front or at end of the tweet. Open up a window at www.summize.com and input #ASD to follow along with the conversation at the specified times. Most likely they will run longer than one hour. Stay tuned here and to my blog for prize and panel info.

We will be testing your knowledge on autism spectrum disorders, this is how the prizes will be awarded.

Bonnie has assembled an ever-growing collection of prizes, ranging from a children’s hammock (Charlie is too big for this, I suspect) to software to storytime felt sets. I’m not a big Twitter-er (my Twitter id is autismvox) but will be sure to be Twitter-ing on December 16th, and I don’t think I’ll be alone.

I certainly wasn’t for my birthday. We had dinner at a diner a couple of towns over, Jim and Charlie on one side of a booth and me opposite, and then it was home and opening presents and my guys were (as always) very nice to me, though I didn’t get anything on the order of the Autism Twitter Day prizes likes Mary’s Gone Crackers or a hardback version of my ancient Greek textbook.

A couple of years ago, I stopped holding Charlie’s hand on our regular walks around the neighborhood. He was starting to let go more and more, to pull away when he wanted to walk on the grass or stop to examine a crack in the pavement. At first, this seemed like not the best turn of events. How was I to stop Charlie when we came to an intersection? What if he started running away?

At first, I made a point of walking reallyclose and our walks were a bit nerve-wracking, for me at least. And I realized that, for me, the first thing I had to work on was my nerves: I had to stay calm and carry on. Charlie doesn’t talk a lot (in words, that is) but he certainly understands a great, great deal of what he hears, and picks up a lot of non-verbal communication; it’s long been evident that he can sense when we’re mad, or upset, or anxious, or obsessing. And if I broadcast “anxious vibes” when he was walking “hands free,” Charlie would, more often than not, start running.

So we slowly learned to walk together on the sidewalk. Jim and I made rather a big show of stopping when the sidewalk ended and tried to get Charlie to look both ways to see cars coming. It was hard to gauge how much Charlie was understanding when we explained the dangers of cars (and of running into the street). His teachers have worked on crossing the street but the many bike rides that Jim has taken Charlie on in the streets (yes, it’s been hair-raising, on occasion) have been how Charlie, slowly and over time, has learned to watch for cars and to stop at the intersections.

In fact, when Charlie sees a car in the street, he stops, even if the car is not moving.

(If we’re at a busy intersection, we still hold Charlie’s arm or the back of his coat—-you just never know.)

I hadn’t thought of it those many afternoons that Charlie and I walked together up and down suburban New Jersey streets, and that Jim held Charlie’s shoulder and directed him to “squeeze brakes” at the stop signs—-but teaching Charlie to walk beside us, “hands free,” has been an essential skill and has made possible one of our favorite things to do altogether as a threesome, long walks.

It was super freezing cold Sunday afternoon. We all donned various layers (Charlie has taken to wearing a blue fleece-lined hoodie and a parka over it) and went to see the tree at Rockefeller Plaza. That meant walking down Kennedy Boulevard in Jersey City to get to the Journal Square PATH train and a long ride all the way to 33rd Street in Manhattan (it was warm, and there was time to half-snooze) and then down 5th Avenue to the tree. It was less mobbed than it has been in previous years (it was that cold) and we even got a fast glance at the skaters. Charlie craned his neck to glance at some of the shop windows at Saks Fifth Avenue (one with snowflakes riding in the swings—-like the ones at an amusement park—-especially caught his eye). Then back on the subway to Hoboken and a walk up from the waterfront to Washington Street for a hamburger (for Charlie) and then, with Charlie running and singing happily, hurrying back to the PATH station, a Boreas-like wind at our backs. And then back down Kennedy Boulevard.

And you know—on the last two legs of the trip, Charlie held Jim’s hand or my arm and shoulder. Not too tightly, and with a smile.

And then he’d run ahead, both hands tucked under his two hoods, and over his ears, and I could see him up ahead when he stopped at the sidewalk’s edge, waiting.

Courtesy of today’s Guardian, a timeline of the MMR controversy starting in February 1998. As my son was born in May of 1997, each date on the timeline evokes a memory of where we were living (St. Louis, 1997-8; St. Paul, 1998-2000; St. Louis, 2000-1; central New Jersey, 2001-3; northern New Jersey 2003-6; north central New Jersey, 2006-now), and what he was doing, and learning.

(And I’m not making the central/north/north central New Jersey business up.)

Housing for disabled adults in New Jersey.

The current economic crisis, and its effect on the housing market.

This post is about both of those topics.

Don’t stop reading—this is an upbeat post, despite the subject matter.

Certainly one wishes that the question of housing for disabled adults weren’t the sort of topic that is accompanied by words like “worries” and “depressing.” But it very much is, right now. In New Jersey, where we live, the waiting list of developmentally disabled adults wishing to move into government-supported community housing has over 8000 people on it. Last week’s report that 28-year-old Tara O’Leary died of starvation after being removed from a group home run by New Jersey’s Department of Developmental Disabilities, and that her death is being investigated, add to the concern, as does the story of 35-year-old Kate Southern in Illawarry, Australia.

Yesterday’s New York Times reports on Our House, a New Jersey nonprofit that creates housing for  developmentally disabled people by buying and renovating single-family homes in suburban communities. With prices falling in the housing market, and fewer people looking to buy, Our House has been able to purchase some new homes at reasonable prices:

On one of the purchases in Berkeley Heights — in a well-established neighborhood of homes valued at $1 million and up — Our House was the only bidder. For $700,000, it scored a five-bedroom ranch with a large yard and a new kitchen.

A four-bedroom house a few blocks away was bought for $525,000; a four-bedroom ranch in West Orange was also purchased, for $425,000. All three houses are now being converted, and will open as group homes early next year.

Further, there’s been changes in New Jersey’s Council on Affordable Housing regulations to ensure that municipalities make housing for the disabled available:

In the past, towns were able to meet their affordable-unit quota by taking part in a regional agreement that permitted the trading of credits between municipalities. The recent changes eliminated this option, explained [George] Vallone, a developer with a company called Hoboken Brownstone, and now each town must meet its own obligations.

Vallone is also the President of Our House’s board, all of whom are volunteers.

Our House was particularly concerned about the needs of disabled adults as they grow older. Another member of the Our House board, Richard V. Olsen, a professor of environmental psychology at the New Jersey Institute of Technology, provided these recommendations for the kind of the house to look for:

“a ranch house on a level lot, since wheelchairs might become a necessity; abundant natural light to accommodate aging eyes; easy flow between the rooms; and wide aisles and door frames.”

All things I’m filing away as we keep moving forward in preparing Charlie, and ourselves, for the future.

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  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.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  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

I have been thinking more than ever about where Charlie will live as an adult since hearing about the services offered in different states at last Friday’s IACC meeting. The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.

Tara O’Leary had severe developmental disabilities and was a client in a community care residence in Hunterdon County in central New Jersey. Her death is being investigated by both the state Department of Human Services and the Hunterdon County Prosecutor’s Office. According to yesterday’s FOX News, O’Leary had brain deformities, scoliosis, and other severe medical conditions. The residence where O’Leary and two other women lived was funded by the New Jersey’s Department of Human Services’ Division of Developmental Disabilities. On September 11, O’Leary was removed from the home: According to her cousin, Eileen Devlin, medical records said that O’Leary (who was 4′10″) weighed 95 pounds at a doctor’s visit in September 2007. In August 2008, an aunt, Patricia O’Leary, saw her niece, who was “gaunt, with unwashed hair and shoes on the wrong feet.” O’Leary had not had a guardian since the death of her father in 2005 and her aunt asked to be her legal guardian.

Once she was taken from the home, Tara O’Leary lived in an institution for a little over a week before she was taken to Hunterdon Medical Center suffering from dehydration, malnutrition and bedsores and septic shock, Devlin said. She weighed just 48 pounds at check-in.

Devlin said that with a feeding tube, her cousin’s weight rose to more than 70 pounds by November, but her overall medical condition did not improve. She died Nov. 10, days after she, Patricia O’Leary and another cousin became her legal guardians and decided to take her off life support.

The other two women who lived with O’Leary in the house—one of whom had also lost a dangerous amount of weight—have been removed and are now healthy. The woman’s case manager has been suspended.

O’Leary relatives noted that, after the death of her father, they were only able to visit her occasionally and were “never allowed to see her in the home where she was living _ or even to know exactly where it was”—a potential violation of state policy.

As noted in yesterday’s MyCentralJersey.com, the prosecutor’s office is also looking into “the circumstances surrounding the quality of care and death of a disabled adult.” Jennifer Velez, commissioner of the Department of Human Services, made this statement:

“This death is unacceptable on many levels, and we’re doing all we can to scrutinize every aspect and prevent tragedies such as this from occurring again.”

A roundabout sort of statement—so some “aspects” relating to the Tara O’Leary’s care were not being “scrutinized”—-that seems, more than sadly, too evident.

A mandatory autism registry has been proposed in New Jersey, today’s Press of Atlantic City reports. Health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday. The registry has been proposed as an amendment to the state’s birth defects registry (N.J.A.C. 8:20; more details can be found on the Autism New Jersey website), “although autism is a developmental disorder not a birth defect.” Registration is mandatory, but families can choose to withhold personal information, such as names and addresses:

Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child’s parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information. (from Autism New Jersey

With such a registry, it’s hoped that families with autistic relatives can better access state-provided social- and economic-assistance services, as Gloria Rodriguez, director of the Special Child Health and Early Intervention Services for the Department of Health and Senior Services. The information on the registry would remain confidential.