Looking ahead to next year’s seder, I think we’ll prepare both more and less.

Any questions?

It went well this year. I’m reveling in the lack of Passover-related chores just now - a little more than a week ago I was looking frantically for the good flatware (more place settings than the everyday stuff), realizing we didn’t have enough drinking glasses, patting myself on the back for having effortlessly made charoses and salt water a day or two before, and fretting about how Alex would fare during the seder.

There was a certain amount of resistance on Alex’s part and a brief spell in the bedroom with Daddy, but he settled down and read the four questions in his soft, soft voice - so quiet compared with his “I want crackers!” voice or the one he uses to screech at Ned. 

It’s possible we over prepared, because by the time we sat down with our neighbors for a dress rehearsal seder on Tuesday night, Alex seemed kind of tired of the whole thing. So next year, no dress rehearsal, just a week of preparing, and more talking about not just the holiday itself, but how there’s a special day coming up and that good behavior is expected from everyone. 

Jeff said yesterday that it will be an uphill struggle for Alex to become an adult who practices Judaism, and I agree. Today he told me that while for many people rituals follow faith, for Alex it’s the reverse. We perform the rituals with him - we light the candles on Friday night, we say the blessing, and now he knows the words, knows those actions. I think he’ll learn to identify himself as Jewish because he is someone who knows the seder ritual, knows that we light candles on Friday nights and say some words that go with that ceremony.

This year’s seder is fading astern. The tablecloth’s in the wash, the good cutlery is back in the top of Jill’s closet. I told Jill that about now she should draw up a list of stuff that went well and stuff that didn’t, in preparation for Seder 2010.

For those who’ve never attended one, the seder is a ritualized meal the courses of which are served out in timed order - how rigidly timed depends on the participants - and bookended by reading portions of the Haggadah, a book of stories and religious parables about the ancient Jewish people. The evening ends with platters of desserts and presents for the youngest attendees, who during the ritual must also ask questions about why this night is different for the Jewish people.

A seder presents a peerless test of getting someone with autism to sit, listen, eat, and otherwise partake of a special family moment. This spring, Alex’s is worth a last look astern.

“He’s making progress,” grandpa said at the end of this year’s two-hour event.

Didn’t start that way. Alex sat between me and Jill. Despite days of preparation (perhaps too much?), Alex didn’t want to sit at the table for more than a few moments. In those moments, he did, under Jill’s coaching, recite a question or two in Hebrew. Then his legs straightened to the floor and I felt his muscles tighten in preparation for a bolt.

Last year, he utterly refused to sit at the table, or even to turn down Elmo, until I had to leave the house with him and hit a coffeeshop for dinner. I figured last year that we no little right to compromise this special night for our guests, and that as the only adult non-Jewish person present, it was my job to take care of the disturbance, much as I would’ve in a restaurant.

This year, Jill pointed out that seder is all about the kids. And I guess it hit me that Alex is going to have the hardest time of anyone we know finding, taking solace in, and practicing whatever faith he decides he wants. He faces an uphill fight to become a grown-up, observant Jew.

Alex bolted about three times. I took him by the hand each time, leading him out of earshot of the table. I spoke in firm whispers that were, I like to think, short of hisses. “Alex,” I told him in the kitchen, “there’s no way I’m eating a cheeseburger this year!”

By the third bolt, I simply took him into the bedroom and shut the door. We stayed on the bed until I could hear the first half of the evening’s reading wind down and Jill came in to see if we’d be joining them. (While in the bedroom, I also missed Ned’s splendid reading

Jill and Aunt Julie corralled Alex for the rest of the evening, and in the best ways: Jill threatened Alex with no presents or cookies until he sat with us, and Aunt Julie, in the tail-gunner position at the long dinner table, kept telling him “no TV!” He listened. He listened. Progress indeed.

Beyond helping Alex on the road to faith, I think we may also have learned something about taking him to any social setting. This night was different, but I hope it will resemble more to come.

Image: sxc.hu

Well, we survived Passover. Next year, I’m going to have t-shirts made up: We survived our seder! On the back: Next year at someone else’s house!

Match the egg with the picture of the egg!

Jeff thought I should give a run-down of what went right and what I’d do differently next year, and here it is.

Drilling and practice were definitely a good idea, but on the third or fourth night of sitting around the table, all four of us, reading the parts of the Haggadah that we thought would interest Alex most, he seemed to lose interest, jumping up and helping himself to crackers, going to the bathroom, and in general just seeming like he was kind of seder’ed out. By the time it was the day before the day before Passover, and we were going to have our dress rehearsal seder with some neighbors, Alex was clearly put out. He watched TV, he decided it was bath time, he strolled around naked. (Our neighbors, two girls age 6 and 8, screamed. “This is definitely R-rated,” they said. So there’s next month’s project.)

Wednesday, showtime, had more ups and downs. I baked Passover-recipe chocolate chip cookies and had them stored safely for the grand dessert extravaganza that ends a seder. Like Tuesday night, Alex loved helping set the table. He liked helping set up the seder plate - ours has pictures as well as words, so it’s fun to put the egg on the little picture of the egg. He was insistent that the red armchair be returned (again, and again, and again) to its usual place at our little workspace. Then it was time to sit down. He didn’t want to sit, but he did (briefly). Then he jumped up. Jeff and I got our troubled, we’re-the-burdened-parents-of-an-unruly-autistic-on faces on. Then we started hissing at him, “No cookies unless you sit down! No present unless you sit with us!”

Next year, I think we’ll have some reading practice and more talking about what the kind of behavior we expect from him. Though he didn’t sit with us the whole time on the real seder, he kept his pants on the whole time; he read the four questions in his soft little voice; he was delighted with his Afikomen present (a little farm book from Grandpa); he was thrilled when the chocolate chip cookies were served.

We tried to stress this year that Passover is a special time, and the seder is an extra-special occasion, one that’s very important to us. I think he got some of that, and Ned says Alex was thinking something like, “Oh, I realize this is Passover. They were trying to tell me this all along, and now I get it.”

I’m not sure all that’s true, but I think we’ll stress next year how this is a holiday that requires special behavior and extra attention to other people’s feelings. We’ll run through the high points of the Haggadah, but we’ll also talk about how we sit… we read… we do not watch TV… and we will get cookies and a present if all goes well. It was better than last year, and hopefully not as good as it will be next year.

The first time I had a seder at my dinner table, I forgot to make salt water that afternoon. My father looked at me inquiringly, and I jumped up, mixed it up quickly and sat down, fuming at myself. This year, I’ve already made salt water about four times. Now it’s just part of my after-dinner routine as I bring dishes into the kitchen.

We’ve started our thousand seders so Alex can get used to the rituals and rhythms. Every night we add another part of the service. We started with just the opening blessing and the four questions. We’ve added dipping the greens in salt water, saying the 10 plagues and dipping a spoon in a glass of wine (my sister thought Alex would enjoy doing this, and she was right). Tonight we’ll sing Dayenu for the first time, so I spent time on Youtube looking for a good video of someone singing it. (Found a cool remix, but it’s more a rap homage to Passover than a cover of Dayenu.)

We also read through the Four Sons (or Four Children, as many translations now read). When I get to the child too young to ask a question, I always choke up a little. I’m thinking Alex has never asked why we do certain things. And each time we run through our mini seder I think of Sandy Miller-Jacobs’ essay on Passover, Four Children at the Seder, a moving essay about how special needs children may or may not participate in a seder. They are the “fifth child,” Miller Jacobs says. Or perhaps it is their siblings, embarrassed and uncomfortable and unwilling to attend, who are that absent, fifth child.

Last night Alex jumped up to go to the bathroom, get himself a little snack of the kind of crackers that are strictly forbidden during Passover and in general decided he’d had about enough seder for one night. That was OK. We’d hit our high points.

I hope Miller-Jacobs, a professor of Special Ed. at Hebrew College in Lexington, Mass., would find our seder inclusive. And while we’ve broken all kinds of rules - eating matzoh the week before Passover among them - I wish only I’d thought of this earlier.

What threw me about Alex at last spring’s Passover in our home was his behavior a year before: He didn’t exactly sit with us, but he hung around the table and seemed to want to participate, flirted with asking the questions and delighted, of course, at the presents at night’s end.

So last year? He wouldn’t leave the TV, and wouldn’t even keep it turned down. He refused to come to the table, refused to join in at all. I’m not Jewish, but Jill is and so was everybody else there, about six guests.

Though it’s absolutely always my last resort, I saw it as my job to take him out, much as I would’ve if he’d been disturbing people too much in a restaurant. I hesitated to surrender Passover 2008 to autism, but I also thought of it as a duty to my guests. I was the only non-Jewish celebrant.

He and I had a good time at a coffee shop, where Alex scarfed his chicken and ate all his ice cream. I had a cheeseburger. Delicious, but not the meal either of us should have been having. “Next year, Alex, we won’t do this.”

If this year isn’t different, it won’t be Jill’s fault. “Passover is about the kids,” she’s maintaining in the same tone of voice she gets when she’s determined to pick up the bedroom, the same tone she used when she knew what was right about his medical care, the same tone she used when she knew we’d found Alex the right kindergarten teacher. Passover IS all about the kids: They ask the four questions, they learn about their people’s history.

So we’ll warm Alex up with a wooden toy Passover set (which he’s kind of obsessed with). We’ve planned a couple of practice Seders, and we plan to shorten the real ceremony and to practice the questions with him.

With autism, it never seems to be the trouble you expect that floors you. But I’m confident that I will not be eating a cheeseburger on this year’s different night. I imagine Alex will, however, still find the presents to be the highlight.

The ASA has a good primer on involving children with autism in all kinds of religious events, including Passover, at http://www.autism-society.org/site/PageServer?pagename=life_fam_religion

Jill and I also have an older podcast about holiday experiences in general, at http://jillandjeff.podbean.com/2007/11/18/happy-holidays/

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.

Three more days to go of the Science Blogs Book Club. Much talk of framing vaccines, framing autism, and more responses from Dr. Offit about his book. And today, I talk about myth, religion, and Jenny McCarthy as a, and perhaps the, false prophet of autism.