This year is going to be different. After a number of semi-disastrous Passover seders, I’m loaded for bear. I’m planning like mad, and I’m boiling over with ideas. Alex is almost 11, and the clock is ticking. He likely will not be bar mitzvah’d at age 13, like most other Jewish boys, but he will be some day. And a key part of his Jewish education is understanding and participating in the rituals of Passover.

Step one begins with a purchase. A toy wooden Passover set by KidKraft, a company that also made a toy wooden Hanukkah set (menorah, candles, little wooden flames, a frying pan and some latkes or potato pancakes). Alex loves this set. I love this company, because when we lost one of the candles, I emailed them and ordered the part. They do not charge for replacements or shipping.

I’m willing to bet Alex will adore setting up the toy seder plate and putting the  matzoh in its matzoh cover. And I  love a child’s play set that comes with a play bottle of wine.

Step two. Like the old New York joke about how you get to Carnegie Hall (practice! practice! practice!) we’re going to have a number of seders. There will be a dress rehearsal the night before. There will be a mini seder with his classmates. I have to digress here and say while he goes to a public school, I really doubt there will be a problem about using any religious rituals in the classrooom. For years he’s been coming home with coloring sheets about Three King’s Day, St. Patrick’s Day and the Feast of Annunciation, complete with pictures of Mary and the infant Jesus. So a few Old Testament fun facts about Exodus and the flight out of Egypt should be okay.

I’m planning a bunch of mini seders, and they will all hit the same high points (candle-lighting, Four Questions, Ten Plagues, a couple of traditional songs and a round of dayenu).

On the night itself, we will have our seder. If all goes well, Alex will attend and participate. We will not ask as much of him as we have in previous years. The service will be short. He’ll help hide the afikomen, and he’ll get a nice gift from Grandpa. At least, these are my predictions.

Okay, Alex was actually looking at his foot when I snapped this. But you get the idea. Jeff and Alex were on the couch, both reading. Ned was at the dining room table. I was taking this photo before sitting down to read. The house was quiet. It was heaven.

“Teaching autistic children reading can be challenging and time-consuming,” according to the subject’s primer on Lovetoknow, “but worth the effort and very rewarding.” Books with pictures, audio books,
and touch-and-feel books reportedly work well.

The Ezine article “Tips for Teaching Autistic Children Reading Skills”recommends use of music and games, and a base of “reality” in the stories, steering clear sometimes of fantasy stories and sticking more to stories of children simply going through their day.

A list of titles recommended for autistic children includes works by authors Bill Martin and Eric Carle, among many others Alex himself has enjoyed and echoed. We have to give a shout-out to Dr. Seuss, whose many titles include several (”Green Eggs and Ham,” “The Sneetches and Other Stories,” and “Horton Hatches the Egg”) that are still favorites.

My son Alex was born almost three months early. He spent his whole first year living in a hospital (consequently, so did my wife Jill and I). But eventually he came home, started EI, dragged an oxygen cannula around after him – I used to watch Alex’s cannula swing back and forth, back and forth, while he rode his wooden rocking horse – and got carted to doctors to get rid of medical equipment and to get his diagnosis of PDD-NOS. Alex is 10 now.

Time went on and Alex started special-needs pre-school and we had another son, Ned. Ned, 8, is typically developing and intensely aware of being the sib of a brother with autism. “Rest of my life,” he sometimes says. I’ve already had a hundred, maybe a thousand times more conversations with Ned than I may ever have with Alex. Sometimes I look at Ned and think I may be his dad but I know nothing about what Ned’s life will like.

So Jill and I live in a small Manhattan apartment with two little boys, a cat, and autism. Alex is semi-verbal, but in many ways he runs the house. One or both of us get up at night when he does; wake in the morning when he does; chase him down the hall when he leaves the apartment laughing; re-arrange family events because he disrupts them; cook two meals in the early evening because hot dogs because hot dogs are pretty much all he’ll eat for dinner.

Jill and I love each other very much, but sometimes our life just makes us mad, and sometimes that means mad at each other. We do pretty well, considering. Considering that marriages don’t seem to be built to endure something like autism.

Thanks very, very, very much to everyone for your kind words about the big change. It is definitely a change and I’m still adjusting—-I’m very interested in knowing what you think. Thanks to all those—-Kev, Emily, Mike, Lisa—who’ve given the new autism blog a shout-out It’s been fabulous blogging with Dora and I’m very excited to be part of the Change.org community.

There’s been a couple of questions about what will happen to this blog: While I won’t be writing it after this week, someone (I’m not sure who) will be taking it over. As far as I know, the archives will remain on the web. If you’ve other questions, or if there’s a particular post that you’d like to bookmark or otherwise save but can’t quite remember the title for, or if you’d like to say hi, please send me an email. And hope to see you here……………

A long time ago (definitely “before Charlie,” which is “bC” to Jim and me) “someone” (she writes poetry) wrote this to me:

Poetry is life; it should change everything around it. Do only what changes you.

The lines were written at the end of a letter regarding a topic that was, at that point in time (I was about half as old as I am as I write this), of total everything significance to my life: What should I study in graduate school?

I was a Classics major in college and, finding the sustained study of Latin and ancient Greek intellectually intriguing, albeit a little wearying on the soul, I was drawn to another academic discipline, Comparative Literature; I had hopes of studying something called “literary theory” or just “theory” (as in something known as deconstruction). Should I stick to Classics, to the philological study of dead languages that I had been entrenched in since I was 13 years old? Or should I do something that seemed a bit more……daring, and venture beyond the pleasant realms of relative clauses of characteristic and indirect discourse, and the dative of possession, and learn about this theory thing?

Nearly two decades later, I can—as I think you can surmise—-only shake my head in exasperation at my younger self. Getting a graduate degree in whatever or whatever was the easy part: Holding onto my son when he was 6 years old and flailing, flailing, flinging his body and especially his head with every bit of his energy towards a manhole cover on a train platform in Newark, New Jersey—-and only wishing he’d stop, but he just couldn’t, and really especially wishing that the ring of people who were standing transfixed around us would just do something else than what they were doing (standing there and looking)——I never knew how easy I had it, when I was agonizing over graduate school programs in 1989.

Charlie was born some 8 years later and, ever since then, my life and that of my husband Jim’s had been one journey into the unexpected, of the unexpected. Charlie’s being diagnosed with autism in July of 1999 was but the moment when Jim and I, and Chariie, stepped onto a long, winding, and so often uphill road. And while I’ve still kept the collected opera of Virgil, my favorite ancient poet, close by, it’s Charlie who’s really changed everything.

To rewrite some of the words that poet once sent to me: Charlie is our life, and life with him has changed everything around us.

Because of Charlie, we’ve left jobs (a tenured, endowed position at a substantial midwestern university in Jim’s case) and moved our household several times (and there are more moves in the future, we know). Because of Charlie, everything is changed and different from what I thought my life at the forty year mark would be like, and while it’s not easy, it has been good.

And there’s a new change, a big one, right around the corner for me.

As reported, I’m blogging with Dora Raymaker about autism at Change.org starting now. The new blog is still a bit “under construction” but it’s up and running and some discussion’s started about, for instance, some autism controversies: Let me know what you think.

And yes—-I will not be blogging here as of next week. I have a lot more to say about that and it’s very hard to even think I won’t be writing at Autism Vox anymore. I created the name for the blog and have been writing it since February 2006. I’m hopeful about this change, but that doesn’t make it easier—–it’s been a long and interesting journey with Charlie and it looks like there’s a new path ahead, and I hope to continue walking on it with all of your company and community.

Because the journey is best with friends, my two great guys, and all of you—–onward, together.

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.

Starting January 5, 2009, voting for the 2008 Weblog Awards begins—–and this blog, which I’ve been writing since April of 2006, is among the finalists for best Medical/Health Issues Blog. I’m included in some good company, including Respectful Insolence—-The Differetial—-Junk Food Science—-Stirrup Queen.

Thanks to everyone for reading Autism Vox, writing in, sounding off—-it’s been a great year and onward into a new one (very very soon!).

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

9-year-old Nicholas Benavides died Monday morning in a fire at his house in Corpus Christi, Texas, today’s Caller Times reports. Nicholas was autistic and, according to his grandmother, Maria Benavides, was “’shy, but also friendly and always smiling.’”

On Monday, Nicholas’ siblings, ages 11 and 4, were at their maternal grandparents’ home and Nicholas’ mother was at work. Benavides said her son, the boy’s father, told her he was doing laundry in a room at the rear of the house.

Fire Chief Richard Hooks said it hasn’t been determined if the boy was alone in the house. Fire officials were interviewing the boy’s father late Monday.

When Corpus Christi firefighters arrived at 10:37 a.m., about five minutes after the initial call, the front part of the house was engulfed in flames and a neighbor was trying to get inside, Hooks said.

…………..

Firefighters found the unresponsive boy inside the home about 10:45 a.m. Firefighters began CPR on the boy who was taken to Driscoll Children’s Hospital, suffering from serious burns and smoke inhalation. He was pronounced dead at 11:17 a.m., Hooks said.

Nicholas was a fourth-grader who, the Caller Times notes, loved to ride his bike and play in the yard of his house.