Alex would soon smile at the songs (flagship: theme from the cartoon “Arthur”) on the MP3 player from me, and would explore the picnic basket from Jill, and give surprisingly passing notice to the huge Elmo card from both of us (Ned had handmade Alex a card earlier in the day). But, the closing of Alex’s birthday weekend reminded me yet again that my inspirations for decoration, like most of my ideas that last, come from nowhere.

Birthday chocolate chip cookies. Image: Jill Cornfield

Yesterday, Jill and I too tired to head out at 6 p.m. and buck the crowds leaving a Fifth Avenue parade, decided to do birthday brownies for Alex. Then Jill got the lightning bolt to serve, instead of brownies, birthday chocolate chip cookies! Some ideas are just right the instant you hear them. My bolt came on the presentation. Jill had a pile of cookies in mind, but I took the 11 cookies and arranged them on a plate, a candle in each.

When the lights went down, Alex looked over at me as I vanished into the kitchen. Jill went out to start the song. Alex ran to the couch and pulled a blanket over his head. When I emerged with the cookies and candles and the song started, he giggled and giggled and stayed for a moment in one corner of the room. It’s hard to remember sometimes that Alex can be shy.

Least he didn’t cry at “Happy Birthday,” like on his, I think, fourth birthday. We also spent the day reviving some of Alex’s classic sayings from what had suddenly become a large number of years past. “Pingles” for Pringles, “Boogles” for Bugles snacks, “Lo-Lo” for granola bars, “Palmmutty” for Pirate Booty. Alex smiled when we mentioned them. A little surprising to me was that he didn’t then pester us to give him Pringles, Bugles, or granola bars.

One candle drooped, probably not for the last time on Alex’s birthdays now that he needs a dozen or more. So number 11 faded behind, like something on the shore when you’re drifting down the river. “Know what’s funny about these cookies?” Ned said through a mouthful of crumbs. “They don’t taste like candles!”

“A cat had a birthday, and all the cats came…” — From the video “Dance Party” from “Sesame Street”

June already? Alex’s birthday looms. Number 11th. The other day, I watched Jill and Alex walk away hand in hand in the park and he’s almost up to her neck. Amazing, considering he started at about the size of a G.I. Joe.

Image: Spudballo, flickr.com

We hold his birthday in Central Park, in a playground with a cozy gazebo (”cozy” meaning one point of access, and only one point to protect from Alex bolting). We decorate it, relatives come, maybe even a few friends from school this year. Amazing.

Amazing too that I’m stumped for a gift this year. Last year the boys and I were building plastic kits, so I got him a three-pack of jet fighters. I figured it would be the hit present of the party, but that honor went to a toy microwave oven, I think, from Aunt Julie and Uncle Rob. It was pretty cool, though eventually Alex and I built all three jets.

Don’t live in the past. This is number 11, and I’m stumped. It’s not like I can just ask Alex; like so much with him, it’s guesswork. It doesn’t make me feel like a bad dad by any means, but I do wish I had a bead.

Speaking of which, he loved stringing some beads with Ned the other day. Maybe a jar of those. Maybe a book. A Twitter follower of mine suggests an MP3 player loaded with music he likes, the front runner of my ideas.

Jill also suggests: a picnic basket (already ordered); plastic animals (”eh,” she adds); toy vehicles (see “plastic animals”); and a balance board (”Ned thinks he might like it”). I don’t even know what a balance board is. They grow up so fast.

***

Tips on a birthday party for a child with autism, on BellaOnline.

It’s about 10 to 7 in the morning and naturally (since there’s no school and we could all sleep late), everybody is up. That’s always disappointing, since the night before a school holiday we always rejoice in the fact that we don’t have to get up at 6 the next day. Ned and Alex are quarreling over the TV, as usual, with Ned watching “Ben Ten,” a show he claims is his favorite but which I think he wants to watch only because it happens to be on.

Photo by drcw (flickr.com)

Alex is saying, over and over with growing insistence, “One THREE? One THREE?” He means he wants to TV turned to Channel 13, our PBS station, which often shows things like “Dragon Tales” or “Thomas the Tank Engine.” I prompt him to say “thirteen,” so he starts alternating the two. “One THREE? Thirteen? Thirteen? One THREE?”

Sometimes having a kid with autism is like listening to a piece of music. Not because it’s so beautiful and transporting (well, it is kind of transporting but not necessarily in a good, floating-above-the-earth-on-a-cloud-of-happiness way) but because every minute or so is completely filled with events and sounds and comments that it changes your perception of how long it actually is.

In between checking email and mediating squabbles, I am also trying to keep Alex from running into our bedroom. Figure one of us should get to sleep late. But Jeff finally says Alex can stay, so I’m just outside the bedroom, clicking away when I hear a ripping sound from the bedroom.

When I rush in, I see Alex in the middle of tearing our blanket cover. I knew there was a small hole in it; autism means there is now a huge L-shaped rip that can’t be mended in any way. I’m furious (I loved that cover). I also knew it was a matter of time before he found it, and a hole is irresistible to Alex.

“Thirteen? Thirteen?” Alex has abandoned one-THREE as a request and is using the more correct form. He’s also saying “Sorry! Sorry!” to Jeff.

So I’m feeling irritated at Alex and scanning possibilities (find replacement on eBay? just go to IKEA and find something new?) when I decide 1) I’ll try to fix it, and maybe it will be an obvious but artistic patch job; 2) that autism is a constant lesson in letting go.

Daily I have to let go of  things, actual things such as blanket covers and magazines Alex has ripped, but also of assumptions about what I thought my children should be, and what I should be as a mother.

“Alex,” want to go to a movie?” I asked him on the way. “No,” he answered, shaking his head. Expected. I also expected to get to see about half of Night At the Museum II.

Alex made it through Shrek 3 a few years ago; he’d seen it a week or so before with his class. He made it through his second showing with only an occasionally reciting of the ABCs with his voice at full volume. Few people in the sparse audience seemed to notice. “Really,” Jill hissed to me from her movie seat at the time, “if the worst thing that every happens in their lives is that a little autistic boy makes a little noise at a movie, then f—’em,” except she didn’t whisper in hyphens.

She found $6 shows that keep the lights up and the volume a little low. I don’t think the volume and the lighting mattered to Alex, but the ticket discount sure mattered to me, especially for a movie I expected to see about half of. The movie was 10 in the morning, and informally word gets around the special-needs community that these shows could draw an audience accepting of behavior like Alex’s.

Bribed Alex with a full tube of Chips Ahoy one quarter cookie at a time. Not the healthiest breakfast, I realize, but yet again life was a matter of acceptable casualties for a desired objective: getting Alex to sit through a movie. And he did, drumming on the armrests, sometimes chattering. I can’t say he actually saw the movie, but I can’t say he didn’t, either. I have a feeling our movie viewing is about to pick up.

***

ChARMTracker, a web-based application for autism treatment management, was slated to debut today at the Autism One Conference in Chicago. ChARM is the first internet-based system available in the market that enables parents to gather, and track information they collect on their children, such as gastrointestinal and immunological issues or chronic infections or daily records of supplements, prescriptions, diets, educational interventions, and environmental changes.

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.

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.

So you know how we made sure to have a very lowkey Thanksgiving and also to keep things real simple and understated for Charlie’s birthday, a holiday involving days off from school and an event that has been known to cause Charlie some serious consternation? In 2008, both of these days passed well and quietly for us, largely because we strove to make them Super No Big Deal in the biggest way.

So you think I’d have applied the same tried and true formula to Christmas and New Year’s.

Granted, since we take a 3000 mile airplane trip from New Jersey to California, and (as we traveled on Christmas Eve day, due to Charlie’s having his last day of school on December 23rd) no sooner had we landed and gotten to my parents’ house then we all got into a rented minivan and drove a couple hours out to the Sacramento area to my uncle’s—-due to this, Charlie was doing a lot more (energy-wise, social-wise, transition-wise) in one extremely long day than he often does in a week. The next day, being Christmas, meant that we went to the cemetery, then lunch in Chinatown, then relatives came over, then we went up to my aunt’s house—-and the next day, one of my relatives invited us and several family members out to a big Chinese dinner—-and then the next day, we took, or rather attempted to take, Charlie to Target, only this Target was one he’d never been too and was in a two-story building with mod-metallic-architecture—–

You get the picture. It was totally newness and super over-sensory overload, with a couple dashes of lots of food of a rather rich, holiday feast nature, and several switches from this activity to that event and the result was:

A very big stomachache, in a literal and figurative sense, leading to literal and figurative headaches and some rather erratic moments when Jim and I found ourselves flying after, and flinging ourselves (again, literally and figuratively) upon our boy.

We’ve been saying “nope” to social engagements (with the exception of a lovely afternoon of conversation and camaraderie with friends and their super great kids and a very attractive trampoline; Jim spent the day hiking with Charlie and walking him all over the neighborhoods around my parents’ house); have been all suddenly aware of how many echoes and sounds my parents’ house (it has all hardwood floors) resonates with, and also the height of the ceilings in some of the rooms and the way the space is sectioned up; have been adding up all the greasy sweet (gluten-free, actually, but greasy nonetheless) treats Charlie ate too much of the first two days; have been noting, yes, he is still sleeping in the little single bed my parents bought for him when he was, oh, a toddler. We’ve been making sure that Charlie does all the things he knows how to do at home—setting the table, stripping the sheets off his bed, carrying bags—out here.

And, I appropriated my mom’s calendar and x’d out the days of December that have passed, and pointed out the date we’ll be back in New Jersey. It’s actually a calendar that I made for her (courtesy of iPhoto software). Charlie looked at the boxes with the x’s and then started to turn the pages of the calendar. I pointed out shots of him sitting in the black chair he always slumps in after school; the cheap and study IKEA carpet that never seems to be crumb-free; the kitchen in our condo where he gleefully chomped on half a watermelon; and, of course, the ocean where he surfed and boogie-boarded last summer. Charlie’s eyes brightened up at all this.

No place like home for the holidays.

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

I read about plans for a new preschool for autistic children (in Brownsville, Texas, which—one upon a long while ago—-I briefly visited). An occupational therapist is hoping to start the school, which sounds as if it’ll have some emphasis on sensory sensitivities. I read about a new book on understanding autism written by a written by a 13-year-old whose best friend has a younger autistic brother. I think back ten years ago, to the winter of 1998.

That December was the first time I didn’t make it home for Christmas in California since I went to college back east in 1986. Charlie had had a number of ear infections and colds and the like throughout September of 1998 and, with his latest raging infection, the pediatrician told us we couldn’t take him on an airplane for the holidays. Charlie wouldn’t, we were told, be able to stand the pressure on his inner ears—-so Jim and Charlie and I celebrated Christmas of 1998 at the Rio Grande in St. Paul.

We did make it out to California to see my relatives after Charlie’s ears had cleared up, but all was uneasiness. It was becoming more and more apparent that it wasn’t just because of all those ear infections that Charlie was not talking and kept so much to himself in his daycare room. The image that is fixed in my head from that trip is of a very small Charlie standing between the couch in my parents’ study and the coffee table. My parents had given him a V-tech toy laptop. We turned it on for Charlie and he stared in the direction of the screen, while cheerful recorded voices said “press enter! count how many squares.” And Charlie just stood there.

Charlie was diagnosed with autism a few months later in 1999. And I still so often feel that twinge. What if there had been X program when he was just diagnosed; how much might it have helped him? What if we’d been able to move immediately from St. Paul back to New Jersey, what might that have meant?

And then I recall the conversation I had a few months ago with another mother of an autistic son. She is Lila Howard and is 84 years old, and still the primary caregiver for her son, who’s now in his 50s. She noted that we parents today have it “served up on a silver platter.” She was exceedingly glad about this, and her words gave me a wake-up. How many therapies, programs, services has she learned about over the years, and thought about as helpful to her son? How many more will she hear about still—how many more will I?

Now stop right there, I say to myself. There’ll always be “some new thing you’ve got to try” (one hears this all the time, as it is). There’ll always be some fabulous new remedy, or treatment protocol, or super-duper guru therapist. There’ll always be some new formula for hope in a jar.

Or rather, as I think of it—-even over the past two days when Charlie, far away from his usual routine, his usual order, here in California for Christmas, has seem unmoored and hyper-anxious, and trying so deeply hard to keep it together, and not able to at all, at times—-you just have to keep hoping.

And not the least because I want Charlie to know that we always, always believe in him, and that every day we spend with him is the best present there can be, this Christmas and for every Christmas to come.