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.

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.

A reader, Rev nancy, recently commented on a post about Religious Education for Autistic Children:

Hi I came to the website out of an experience last summer with a man in a parish I was visiting who had two autistic children. When I was in the inner city I wrote simple gospel plays for children with one line apiece for each character because the kids could not read. I used my imagination for most of them. I gave the parishioner two and he took them home and read them with his children He said they liked it very much. I gather these children are high functioning but it would be possible to do these with simple masks or puppets. What else are people doing to teach?

Suggestions, ideas, thoughts much appreciated!

“Figuring out his signs, it’s like watching a third-base coach.”

Says Brian Rattner about his oldest son, Jarrett, who is 13 years old and does not talk or walk. An October 23rd New York Times article describes Jarrett’s bar mitzvah last Sunday, and how his parents came to focus on “who Jarrett was and what he could do”:

When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second.”

Hence, that need to learn to “read the signs” like a third-base coach—-something Jim and I have tried to do to understand how to communicate with Charlie on his terms, in the language he’s trying to teach us.

After a priest filed a restraining order against the parents of 13-year-old Adam Race back in May, there was a lot of (often very heated) discussion about the exclusion and inclusion of autistic individuals in public spaces. The August 22nd Morning News reports on The Point at Bella Vista, a church meant for families with a relative who has special needs. Ginny Thornburgh, director of the American Association of People with Disabilities Interfaith Initiative in Washington, notes that

“the trend is to acknowledge the gifts and challenges children and adults with disabilities bring to the congregation…….. All people of all faiths have a right to be honored and welcomed - a right to worship, study, serve and learn.”

Hope that this is a trend that will certainly continue.

Go here to read about the Interfaith Disability Connection.

This Associated Press story about autistic children and disruptive behavior has been making the rounds of news outlets and websites—-Jen Miller of Tacoma, whose daughter is autistic, writes this in the News Tribune:

….it’s funny how easy it is for some to complain when they haven’t walked a day in an autistic parent’s shoes.

Miller refers to a number of instances of autistic children whose “disruptive behavior” has been the subject of more than a little public discussion and judgment and reminds us, you just never know what might be going on.

In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”

“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”

“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”

The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”

At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.

The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.

So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.

Maybe—at least they’re ways to get a conversation about autism going.

Tuesday morning Jim and I were interviewed for an autism documentary in the making. The director and his crew came to my office in Jersey City, which is in an old single-family house, with barely any space between it in and the neighboring houses (one of which contains my college’s mailroom). Jim and I were interviewed together, which was, frankly, fun. Not that we don’t spend rather a lot of time talking to each other, but it’s a different thing to be asked questions—about autism, neurodiversity, “recovery,” how I got started blogging, when we first thought “something” was up with Charlie, how we ended coming back to New Jersey in 2001—-with the camera on you. Amazingly, Jim and I managed not to interrupt each other.

I spend (as you can gather) a fair amount of time discussing and writing about autism; Jim is in the very last days of finishing his book on the port of New Jersey and New York and it’d been awhile since some topics had come up, such as Jim’s work on the conversion narrative in autism literature (more about that in this book on autism and representation). Jim just taught a course on conversion narratives—often books with a religious topic, such as The Long Loneliness, by Dorothy Day, the founder of the Catholic Worker movement; another topic in the course was recovery, spiritual and otherwise.

It’s possible to see Jenny McCarthy book about recovering her son from autism as such a conversion narrative. As an article in the June 1st Orange County Register puts it,

By 2005, McCarthy was no longer the ditzy blonde from MTV and Playboy, but a best-selling author who wrote about motherhood. That was disrupted when her son, Evan, was diagnosed with autism.

The Orange County Register article is entitled “In the Autism Wars, she leads with her heart” and profiles Lisa Ackerman, founder of Talk About Curing Autism (i.e., TACA,  a sponsor of the Green Our Vaccines rally). “Recovery” and “curing” autism and the intense emotions that parents and other bring to discussions about these came up several times during Jim’s and my interview.

Charlie was around 5 when I started to let go of “recovery” as a goal. When I thought about “recovering” Charlie from autism, I realized that I wasn’t thinking so much about what Charlie needed as what I thought I had to do as a parent. I thought I had to do everything in my power to make it possible for him to not be in special education, to go to college, to live on his own—-if I could make sure of this (I used to think), I could go to my grave in peace. And when Charlie was 5, he needed 1:1 teaching, he couldn’t read, he couldn’t really talk, and we’d done almost every educational and other (as in biomedical) treatment we could read about. Our focus shifted to the day by days of teaching and being, and listening to Charlie.

I think at that point I realized that the “autism wars” were inside of me; that however much I don’t see eye to eye with others about causes or treatments and so forth, the population of people who talk and think about autism every and all the time is hardly everyone, and that we’re more in this together than it might seem, or than we might wish it to seem. I had an image of what Charlie “should” be, and I wasn’t keeping my eyes focused on the real boy really in front of me. The boy who likes bikes over books, and hanging under the pool water than curled up on the couch with one of those books.

With these thoughts in mind, I wasn’t quite sure what to expect on reading an editorial in the July 2nd Washington Times entitled “The Pentagon and Autism, by Karen Driscoll and Michael O’Hanlon. Far from declaring a “war on autism” or suggesting that autism poses some kind of “threat” to the nation, the article is a thoughtful call (though some of the references to autism are more than puzzling, as noted here) for the Department of Defense to provide adequate (at the least) services and treatments for autistic children with family members in the US Armed Forces; the authors call on the DoD to provide “a model for other insurers and health plans to emulate.”

I’m not sure at all where rhetorical calls to “make war on autism” are getting us, but good teaching and treatment for autistic children are simply necessary.

Again and again in our interview, Jim and I kept returning to themes of isolation—how alone families of autistic children can feel and be—and of the simple importance of other people in Charlie’s life. After family, these have been Charlie’s many therapists and teachers, starting with the five young women who were his first ABA therapists in St. Paul, Minnesota, in 1999. The highly structured teaching suited Charlie’s learning needs and the data we meticulously kept taught me how carefully I needed to observe Charlie, to see the nuances of his growth and understanding. Most of all, having all those therapists spending hours with Charlie created, as Jim likes to say, a rich communal experience that neither the therapists (many of whom we are still in contact with) nor Charlie, nor Jim and I, can forget. It’s why our autism experience has been, through some really tough and bona fide terrible times, full of of witness and of hope, and love.

And, as at that interview Tuesday morning, fun, even when life seems at least a little too trying.

A judge has upheld the restraining order barring 13-year-old Adam Race from attending church in St. Joseph’s parish in Bertha, Minnesota. From KSAX:

Todd County District Judge Sally Ireland Robertson says 13-year-old Adam Race engaged in “repeated harassment” while attending services at the Church of St. Joseph.

Robertson says Adam’s family has been unable to prevent him from disrupting church services.

The ruling on Monday follows a hearing last week that Adam’s mother had requested to protest the restraining order. Carol Race says many of the claims in the restraining order are not true.

I’m not sure that “repeated harassment” is quite the right phrase: While Adam’s behavior in church may have made (did make) others uncomfortable and then some, “harassment” implies a certain kind of intentionality, and it’s not clear if such was the case.

Yesterday, Carol Race took the stand at a hearing in Long Prairie, Minnesota, over the restraining order filed against her 13-year-old son, Adam Race, by the Church of St. Joseph in Bertha. From WDAY.com:

[Carol Race] represented herself at Tuesday’s hearing, and questioned the Reverend Daniel Walz for about 30 minutes.

Walz acknowledged that he did not witness all of the alleged disruptions, but said he believes they happened.

Judge Sally Ireland Robertson took the matter under advisement and said she would rule later.

Afterward, Race said she was disappointed that she wasn’t allowed to question the priest about his credibility. She said she and her family will return to the church if the restraining order is lifted.