Wednesday, December 31, 2008

Auld Acquaintance, New Acquaintance

Happy last-few-hours-of-2008!

It's been almost exactly half a year since I asked "Is this thing on?" as I introduced Joy to the blogosphere in my very first Elvis Sightings post. Now here we are, six months and 100 posts later, with a conversation and a community well beyond what I had ever imagined. As I said at the time,
I'm writing mostly for myself, but also for family and friends already met, and also those not met yet. I hope there will be conversation, because I like conversation, but if not, that's OK too.

Well, the conversation has been more than OK. I owe a major debt to Maddy of Whitterer on Autism, for discovering Elvis Sightings and introducing me to her extensive readership. (Niksmom and Osh followed me over from there, I believe.) Bedtime ritual posts led me to jesswilson at diary of a mom, and Rhemashope at Autism in a Word, whose precious daughters have plenty in common with mine. A discussion of the Scottish poet Robert Burns (who introduced, if not actually penned, the Auld Acquaintance poem that we all mumble through on New Year's Eve) opened the doors to Therextras and a lively ongoing conversation with Barbara/BRatK. And then there's Mama Mara, always on the edge and also right around the corner. And many more, and I hope many more yet to come!

Then there are Joy's family members, both the commenters and the lurkers. And the wider lurking community from church and friends far and near and goodness knows who else. Thank you for keeping up with us, and all the prayers and well wishes. Your support means the world to us.

And then there are those who reach Elvis Sightings through search engines. Some find topical tidbits (linear nevus sebaceous syndrome, for example, or craniosacral therapy). Many others are in search of the other kind of Elvis sightings, or vampire encounters, or Santa Claus. Or "how bad is fizzy juice," or whether Handy Manny and Kelly really have something goin' on the side. Welcome all -- even if you don't find what you expected here, we'll raise a glass in your honor anyway. Elvis and Santa and yes, even Edward, can be real for you too, if you clap loudly enough or something...

You know, my mother and her mother both had/have two lovely traditions that I never did manage to latch onto for myself: personal journaling and regular family letters. Suddenly at the age of forty, by taking up Elvis Sightings, I've discovered a way to do aspects of both, with a lovely connected conversational twist. It's been a treat so far!

Finally, I must also acknowledge that I've actually only written, well, ninety-eight posts here. The other two are courtesy of my co-blogger, co-parent, partner in marriage and all sorts of other shenanigans, JoyDad himself.

So together we'll pour the fizzy juice not too long from now (it'll be midnight somewhere in the world, if not necessarily here) and raise a glass to auld acquaintance and new. Blessings to all in the new year, and we'll see you in the next 100 posts!

Tuesday, December 30, 2008

Feelin' No Pain

Pain is an interesting sensation. Nobody likes it -- most of us medicate or meditate it away when we can -- but it serves a mightily important function.

Without it, we might not know that something is wrong.

Joy's pain responses are... unusual, to say the least. I've mentioned it a couple of times on the blog, like when she was going through the phase of biting herself. It's not that she doesn't feel pain at all -- she yelps when she gets her shots, or when she runs into something hard, or when she gave herself a big chomp. But it's generally an itty-bitty fuss. Things that would send Rose into an hour-long, drama-queen tailspin, Joy stops reacting to in seconds.

There are definite advantages to this! It means that I can operate on splinters (and she got a lot of 'em this summer) with scarcely a yell or thrash. It means that she can take a fall and jump right back up with no down-time for fuss-and-comfort.

This past week or so, the pain thing has come to my attention again. Joy got an infection around the nail of one of her big toes, possibly an ingrown toenail kind of thing. I've had those before, and was a total wuss about it. Noticed it every step I took, moaned and whined and complained.

Joy jumped on hers. Repeatedly, joyfully. Without a flinch.

The only signs I had that it was bothering her at all were a day of picking at her big toenails (and that was equal-opportunity, she played with both feet), and that she didn't really want me to spend too much time examining the owie-foot. Which was clever of her, because I did end up poking at it on two different occasions to let the corruption out. Not that she fussed about having it lanced, mind you!

I was on the edge of taking her to the doctor about it. It's just hard to know when you don't have the usual cues. If the red had spread any further, I would have called the clinic. But it turned back around, and is healing up nicely now.

See, there's the scary thing. It's hard to know, when you don't have the usual cues. I've missed splinters on her before, until they got red and angry enough to catch my attention. And when the pain reactions are unusual and the words are few, how does one evaluate potential ear infections? Toothache? Tummy trouble? Hairline fractures?

I've heard it dissed as a myth that people with autism don't feel pain. Certainly I can see the potential for damage and abuse, if that's used as an excuse to ignore people's needs, either physical or emotional.

On the other hand, here we are with our n of 1. And by my best observation, Joy's pain tolerance is incredible.

I can at least hope that, on balance, her unique relationship with pain will be a blessing for her.

I'd wish for my faithful readers that you'll be feelin' no pain as 2008 rolls into 2009, but that might be taken as a license to... overindulge... and I wouldn't be a party to that sort of behavior!! We'll be rockin' the fizzy juice in our household, I can tell you right now.

Monday, December 29, 2008

n of 1, and the Myth of Fingerprints

Two apparently contradictory concepts floating in my mind this morning with regard to Joy.

First is how incredibly unique this little kiddo is.

In a discussion with one of her therapists earlier this month, we ended up describing her as "n of 1". How can you apply other people's research studies to this particular individual, really? How can you generalize anything about her to anyone else? She keeps busting our expectations right and left.

It makes me think of fingerprints. And snowflakes. Not gonna find any two the same, though I understand that with snowflakes at least, it's technically possible.

And yet, when we look outside our window, we see a blanket of white, and the individual snowflakes all blend together into a lovely sparkly layer (a much thinner layer than it was earlier this week, thanks to a wild spate of warm temps and rain!)

And then I think of a line from a Paul Simon song from his Graceland album:
He said, "There's no doubt about it,
It was the myth of fingerprints --
I've seen them all, and man, they're all the same."

All human, we are.

All children of God.

All us neurodiverse, amazing people.

And now, we can't have a reference to Graceland without making the Elvis connection... there's another line in that song that sounds for all the world like he's singing:
Elvis is the watermelon.

I'm serious! Give it a listen. I defy you to hear it any other way...

Sunday, December 28, 2008

Of Zerbitz and Apple Pie

The weather wasn't promising! Heavy fog, considerable rain, tornado watches on the other side of the state line, flash flood watches on our side of the state line, and us with over an hour's drive over the river and through the woods to grandmother's house...

I'm happy to say that almost all the JoyDad relatives made it who planned to be there, though we sure missed AuntieLO who was stuck home with a bad cold. One cousin is celebrating Hannukah in Israel this year (where it's a little-bitty holiday since it doesn't have to compete with Christmas over there), and Auntie Meerkat had to work at the zoo so she and ARatM are arriving for a New Year's visit. Otherwise, though, we had a clean sweep!

Did I ever tell you that GrammaJ has something akin to an Elvis shrine at Christmastime? Rose is developing the appropriate Elvis appreciation -- each knick-knack comes with a little push-button Elvis soundtrack, so she got to hear some of the classics!

Elvis Shrine
Joy had a fine visit, considerably more laid-back than others in recent memory. GrammaJ and GrampaK didn't have to Joy-proof nearly as much. Past Christmases involved lots of running up and down the back hall, where all doors had to be closed at all times to prevent unauthorized excursions. This year? Almost no hall-running, and no dashes through open doors. Joy was mostly content to range around the living room, hanging out on couches and flirting with various relatives.

Joy spent the most flirty-time this year with Auntie Save-the-Tatas (there's been a lot of breast-cancer surviving going on in JoyDad's extended family lately). Auntie Save-the-Tatas entertained Joy with "zerbitz," an entertainment whereby auntie makes a funny raspberry-noise on Joy's tender little bare feeties. Joy loved it. We got the huge Joy giggle-and-grin, accompanied by extending her foot again and again for another round. "More zerbitz please!" said that little foot. "Do it again, do it again!"

Joy Feet Anticipating Zerbitz
For those who are following the JoyDad family tree here amidst the aliases, Auntie Save-the-Tatas is the wife of JoyDad's older brother, who appeared in the Santa 1963 photo. I hereby dub him Uncle Marathon, as he's planning to run another one in 2009. He is the original source of the running craze that has been gradually sweeping the entire family, from ARatM to UncleDO to JoyDad (temporarily sidelined these days) to myself. Thanks for the inspiration, Uncle Marathon! C'mon AuntieS/RatK, all the cool kids are doin' it...

As we experienced at GreatGrandma's for Thanksgiving, it's easy to let the Joy-guard down just a little too far. What would a holiday be without an incident, after all? This holiday's incident involved GrampaK and a delectable slice of apple pie, which he was enjoying as he sat on a living-room couch. Joy moves like lightning when she sees something she wants... and in this case, she wanted two big fists-full of GrampaK's pie! Well, at least it wasn't as dangerous a cleanup as the shards of glass at Great-Grandma's!

We came home with a trunk-load of presents and smiles on our faces, and the holiday isn't over yet. The grandparents on JoyMama's side will be arriving with the New Year.

Meanwhile, if I post twice more by Wednesday, I can do post #100 on New Year's Day...

Friday, December 26, 2008

A Merry Little Christmas

There have been some lovely posts lately on a Christmas Carol theme, specifically the ghosts of Christmas past, present, and yet to come:
Ghosts of Christmases Past at Diary of a Mom, and Ghosts of the Season at Maternal Instincts were two that particularly struck me.

I've been reflecting on Christmas comparisons, Christmas progress, Christmas forecasts as well.

Christmas 2006 was a rough one. We'd just had Joy's autism diagnosis days before Christmas, and had not yet comprehended the dimensions of the regression she'd been experiencing. She was also having seizures, not too disruptive yet but definitely there. That holiday had some elements of shell-shock.

Christmas 2007 wasn't a piece of cake either. That year the seizures were in full swing, and Joy wasn't feeling well at all. The traditional family visit to AuntieS' place was one big meltdown. And then a whole bunch of switches flipped all at once (i.e. another regression) right about at Christmas, and the next few months were some of the roughest we've had yet.

This year? We had a lovely quiet Christmas. The seizures have been on hiatus since mid-September (touch/knock wood!) Not even really on the radar screen right now, which feels very nice.

While the seizures don't have me on edge, the whole regression thing does, seeing as how it's happened twice in a row at this time of year. So far, though, there's nothing in particular to point to. (More touch/knock on the computer desk, or my own forehead...)

We'd hoped to go party with the extended JoyDad family at AuntieS' on Christmas Eve per usual, and even got into the car and drove for an hour, but there was blowing snow across the highway and lots of slow travel and cars in the ditch, and we eventually turned around. A shame to have missed it, but we're hoping to see most everyone tomorrow night if the weather doesn't get in the way again...

We let the girls open one present each on Christmas Eve since they didn't get their extended-family presents. Then they climbed into their brand-new matching footie-jammies and settled down for a long winter's nap.

Christmas morning brought giggles and grins and a lovely pile of presents, though not so many that we couldn't open them one by one, to savor each in its turn.

Stockings Hung With Care
Joy's favorite present, hands down, was the accordion tube in her stocking, that makes noises when you squish it open and closed.

Accordion Tube
The My Little Pony was also a hit due to its lovely stimmy mane & tail. And then there was all the tissue paper, and one shiny ribbon in particular. She didn't really get the whole present-opening thing, but was willing to play along and pull and tear paper when encouraged. The aforementioned presents and trimmings kept her happily occupied pretty much all morning.

Rose was thrilled with her new My Little Pony too (the pony's name is Snow-El, I kid you not!) She also liked her new Children's Dictionary, and the old digital camera that we handed down to her since Santa brought us a new one. She spent lots of time posing the ponies -- Snow-El is the white one with the halo:

My Little Ponies
A highlight for JoyDad was a collection of 8x10 photos from the lake up north, with a promise of post-Christmas framing. For me, I got footie-jammies too! And then there was this mask that Rose made for me:

JoyMama Mask
Christmas Day passed at a leisurely pace. Rose and I baked zwieback, a traditional double-decker yeast bun (the link is to a blog called Mennonite Girls Can Cook!!)

Rose Kneads the Zwieback
As darkness fell in the late afternoon, we all ventured out by car to drive through an elaborate display of holiday lights that appears each year in one of the local parks. And after dinner, we actually built a fire! In the fireplace! And Joy was laid-back enough to keep out of the way, with only a little additional monitoring!

I've got a lot of questions for Christmases yet to come. At what point will receiving and opening gifts actually become a joy for Joy? When and how to involve her in the giving of gifts? Will the whole Santa thing ever make enough sense at all to explain? Or more profoundly, the newborn baby in the manger, God on earth among us?

But all in all, this has been a merry little Christmas so far, with more family treats yet to come.

God bless us, every one.

Wednesday, December 24, 2008

Who Shall Stand?

Christmas Eve morning.

The strains of Handel's Messiah are emanating from the CD player.

"Who may abide the day of His coming, and who shall stand when he appeareth?" demands the alto.

Joy punches a button on her Sesame Street toy.

And up stands: "This is the song, la-la-la-la, ELMO's song, HA-ha-ha-ha!"

We have our answer, folks. I never before did think of the significance of the "El" in "Elmo"...

And with that bit of theological malpractice, I wish you all the merriest of Christmases!

P.S. I treadmilled 5K today. In just under 34 minutes!

Monday, December 22, 2008

Santa 1963

So remember how I said that my family never did the photo-on-Santa's-lap thing?

JoyDad's family was a different story.

JoyDad Visits Santa, 1963
He's on the right of the photo, on the lap of none other than Auntie RatK. What an adorable family, huh?! (Older not-yet-aliased brother on the left, Auntie RatM and Uncle DO had not yet arrived.)

I've enjoyed learning about JoyDad's family's holiday traditions. Like lutefisk. And the traditional holiday cheer that is memorialized every year on their Christmas home videos, the Glögg! I've yet to find a recipe that involves as many bottles as seem to appear on the videos, but I'm here to tell you, it's some amazing stuff. I have it on good authority (cough, Auntie RatK, ahem) that the fumes alone as the Glögg simmered on the stove could cause a state of elevation.

The holiday fumes in my own extended family had more to do with the simmering of dried green beans (I found a recipe that calls the dish Leather Britches, tee hee!) I guess there's a parallel to lutefisk, in that it's an old-fashioned method of preserving food that is now really only used for the sake of tradition. I've done it myself, though, from scratch, all the way from growing the beans in my own garden. Traditions must be preserved, no?

Lots of fun traditions, this time of year!

Saturday, December 20, 2008

Of Elephants and Snow

Baby NoahSo JoyDad and I were sitting at the dining table. Joy was watching one of her Baby Crack Einstein videos, the Baby Noah one where they march out a whole bunch of animals two by two.

"Elephant," said the DVD.

"EH-uh-fuh," came the echo, with totally precise timing and inflection.

I happened to be watching Joy at the moment, actually saw her lips move. JoyDad whipped around, what was Rose doing imitating Baby Einstein?

Looky there, we just had an elephant Elvis Sighting! Never heard her do that one before, who knows when we'll hear it next!

[Aside: had a really weird Google search hit on this blog yesterday. The search terms were "does baby einstein cause seizures". Heh. Wonder how that rumor got started.]

What happened later that morning had little to do with Elvis, and much to do with milestones.

As neighbors to Mama Mara, we too had a snow day yesterday. It was beautiful.

Snow on the Trash Cans
And JoyDad got to give his new snowblower a workout...

And today we all went out sledding!

Neither Joy nor Rose much wanted to go sledding last year. Rose was timid, and Joy wouldn't stay in the sled, either for a pull-ride or to go down the hill.

This year, Rose belly-flops without a second thought, and Joy sticks to the sled like a little burr! I sent Joy out into the backyard with a therapist and a sled the other day, and the therapist reported that Joy kept climbing into the sled to be pulled around. "Did she ditch out the side a lot?" I asked. "No, she held on with her hands really well," came the report.

Well, now I've seen it myself.

Joy on the Sled
JoyDad was able to give her a ride all the way from the parking lot to the hill. I was able to tow her UP the hill after a ride. Eventually we got brave and sent her down the hill on her own (I went first on a separate sled to be at the bottom to catch her.)

You should have seen her face on the first run! Sheer delight.

I don't have Redheadmomma's chops at sledding photos but here's a shot that sets the scene:

Joy Sleds Down the Hill
Joy is the sledder, JoyDad is the dark manly silhouette at the top against the gray clouds, Rose is at the right with a red sled.

Happy winter, everybody!

Friday, December 19, 2008

Here Comes Santa Claus

I was struck by a post over at Autism Vox earlier this week, called Santa Can Wait, in which Kristina mulls over the fact that her pre-teen son Charlie has never sat on Santa's lap. Malls were potential meltdown triggers, and her son never did "get into" imaginary characters. Besides, she reminds herself, she'd just have to eventually reveal that Santa is really Mom & Dad anyway...

Well, Joy has never sat on Santa's lap either. Come to think of it, I'm not sure I ever did myself, until I was an adult (and I don't believe there's any photographic evidence of that occasion, probably just as well.)

In my case, it just wasn't the family tradition. In Joy's case, the busy-ness of the mall isn't the issue, nor is particularly problematic for her to go snuggle with a stranger (yipe). I think she did get a visit from Santa at daycare one year, in fact.

Alas, the reason that Joy has never sat on Santa's lap can be directly traced to her sister.

Here's what happened on our first attempt to take Rose to see the mall Santa, at the age of 10 months:

Rose Objects to Santa
The next year we discussed it, and she seemed to have at least an interest in Santa-visiting, though she asserted, "I don't like his ho-ho-ho!" So we got her all dressed up, and went to the mall to be early in line when Santa was to arrive. She waited with minimal twitching and fuss, right up until she heard him walking down the mall, jingling his bells, and (of course) booming a jolly "Ho, ho, ho!" Meltdown before he even got seated. We stepped out of line and made our escape. After she calmed down I got her to pose with a much less threatening Santa statue further down the mall, only four feet tall:

Rose Prefers Her Santa Fake
So that's why we never went back, and it hardly seemed worth it to take just Joy.

Interesting wrinkle this year: back in November, Rose decided to write a letter to Santa. She carefully wrote out a few modest requests, including a request or two on Joy's behalf. Then she folded it up, wrote out the envelope to Santa at the North Pole, carefully including her real return address as she'd learned in school. I almost didn't post it... but then rather thought that there'd been enough prevarications about the whole Santa thing, and wanted to tell the truth that yes, Rose, I actually did mail it for real.

Fast forward a couple of weeks, and Rose puts the pieces together. Santa's not real, is he? Mom and Dad stuff the stockings (and eat the cookies, and drink the milk, and consume Rudolph's carrot!) When she asked it straight out, we copped to the truth. But when we asked if she still wanted to play the game, she absolutely wanted to get her stocking filled. Quick on the uptake, this girl!

Fast forward again to yesterday, and Rose gets a letter in the mail. Return address: Santa Claus, North Pole. And inside is a computer-printed poem from Santa about how he'll try to make her Christmas happy, but she has to promise to be good! And then there was a handwritten "Santa" signature, and one-sentence postscript about how nice it was that she included her sister in the letter...

I wish I knew what was going through her head about this whole thing! We didn't point out the hometown postmark. But it's pretty clear that Mom & Dad didn't write the letter. We were too obviously gobsmacked when it arrived!

Meanwhile, Joy too has received a lovely pre-Christmas surprise, in her case from one of the members of her large circle of support:

A Gift for Joy
The photo doesn't do it justice! It's a little shadowbox that she hand-decorated for Joy, with a bunny in the "box" part (referring to our pet bunnies) and the "Joy" at the top and a tiny rose on the heart in the lower left corner in honor of the big sister.

Thank you, Santa, so very much!

Wednesday, December 17, 2008

Spin, Spin, Spin Redux (and Photo Wednesday)

Oh, how the plates have been spinning these past few weeks!

In addition to the usual insanity, we've had:

The bells, bells, bells! In the space of 16 days I had 4 handbell rehearsals and 9 performances. The final one for the season was last night. At a retirement center. In a snowstorm. Have I ever mentioned that JoyDad is a saint?

Christmas Bells
Drop me an e-mail if you want a link to online bell-video...

(spin, spin, spin)

Christmas cards & annual form letters! (No, really. We write a good one. Honest.) We've got so many friends, lived in so many places, etc. Our print run currently stands at 140. No, they are not yet all sent, though we've got a good start.

Holiday letters and cards
(spin, spin, spin)

Cookies! For our own faces and extended family, for friends, for office mates, for therapists, for a cookie exchange party tomorrow (I'm going to take Joy to an office party, possibly in another snowstorm, should be a hoot!) In addition to the peppernuts referenced in yesterday's comments, I've also done two rounds of Any Flavor Jello Cookies. Everything's better with butter in the batter...

Strawberry Jello Cookies
(spin, spin, spin)

Trim up the tree! And fix up what goes beneath it as well! The Christmas shopping is almost all done... but Rose is the only one who has yet wrapped a present for under the tree. By the way, she figured out Santa Claus this year, but she still wants to hang a stocking to get her full share of loot. How FAST they grow up!

Christmas tree 2008
(spin, spin, spin)

So far there haven't been too many plates crashing down, though I failed to read Lynda's note that Joy needed diapers and wipes for daycare...

I'm gonna be really ready for a vacation though.

What's that? No school, no daycare, kids home all day for nearly two weeks? Starting next week?

Augghhhhhhh..... crasshhhhhhhhh

Tuesday, December 16, 2008

Like the Wind

With snow on the ground and wind chills hitting double-digits-below-zero this week, Joy isn't getting the opportunities for big long backyard sprints anymore. She sure can dash back and forth through the living room, though!

I continue to marvel at Joy's physical strength. As I mentioned in my very first Elvis Sightings post, she has been a powerhouse from the get-go. Her baby book contains a notation at the ripe old age of two weeks, amazed at how dang strong she was. At two weeks!

One of her favorite "heavy-work" games right now is a jumping game, one she requests by coming over and taking both your hands and beginning to bounce. She wants you to support her jumps by lifting her hands with yours, so that she gets more air with each jump. If you get a good rhythym going, all forty pounds of her are soon flying high with every leap, coming down with a satisfying "boom" on the carpet that must feel so good as it shocks through her frame.

She can even run and jump wearing weights! Her previous OT acquired ankle weights for her and made a weighted vest out of a floaty swim vest, replacing the removable floaty-foam blocks with door hinges (just the right size to fit in the pockets!) and heavy little beanbags. I don't know how much weight it is, but it's enough to make her notice -- and help her regulate, and focus, and lots of good stuff. But especially right after she puts it on, when she's still in run-and-jump mode, you should see how she motors, even with all that weight.

It brings an image to my mind...

I can imagine my girl, grown tall with her hair gone brown like mine did and in a pony-tail, wearing an adult-size weighted vest and ankle weights, jumping up and down beside the track in preparation for her race. Then she takes the weights off and joins the other runners in the starting blocks. "On your mark, get set, GO!" (oh, and haven't we practiced those words, over and over...) And Joy takes off, running like the wind.

Maybe someday we'll train together, and then she'll leave me in the dust.

Me, I don't run like the wind. Jog slow, like old pony. But I'm still working on my Couch to 5K training, and can now jog 25 minutes without stopping, at an 11-minute-mile pace. I've got my eye on a 5K in April that I might actually win! Yes, you heard that right. It's called the Poker Run. How I might win is, they deal you three cards at the start of the race. Then when you finish, you get two more. The best hand of 5-card stud "wins" the race, no matter the time!

Oh, and the race benefits Special Olympics.

Whether Joy eventually runs Special Olympics or with the neurotypicals or all on her own, I'll be cheering her every step of the way.

Thursday, December 11, 2008

Vampire Encounter

Rose had an interesting story to tell when she came home from school yesterday, having gone to school with a ring of teeth-mark beside her eye!

Apparently one of her little first-grade classmates (we'll call him Edward, after the vampire swain in Stephenie Meyer's runaway hit novel/movie Twilight) has been playing a forbidden game on the playground lately. He pretends to be a vampire -- and then he bites. Apparently the victims have been 4th and 5th graders, because the teacher from a 4/5 class came to talk to Rose's class about this situation, and a 4th-grader in her after-school program was showing off the bite-mark on his finger.

Rose had a much more impressive bite-mark to show! Status symbol, apparently. Who knew?

I'm guessing that the game was likely connected somehow to this whole teenage vampire mania that's going around. I actually did read Twilight myself recently. The book's premise runs something like this: a high-school lass, who considers herself something of an uncoordinated misfit, moves to dreary rainy Washington, where she falls into a tingling romance with a gorgeous vampire who is attending the same school (even though he's really 100 years old, he's got the form of a 17-year-old.) The best part of the book is the forbidden desire between the two, upon which they cannot act because, well, he'd kill her. The plot is otherwise a bit creaky. But I digress.

Last week I read an interesting bloggy take on how Twilight may appeal particularly to young women -- or even older women -- on the spectrum:

The Twilight series connects to those left out and different feelings, and it provides a fantasy of a romantic hero and an eternal connection. Just what lots of girls with Asperger's may be looking for.

As Rose finished her account of the vampire incident at school, I realized exactly which kid this Edward was. It was the little guy we ran into at the park earlier in the fall, who called Rose over to the tennis courts and really really really wanted to keep talking with her even though we were kind of on our way home at the time.

Good grief. Rose is (or at least was) the crush-object of a vampire wanna-be!

Well, at least she'll be used to the biting...

Meanwhile, Rose made a different connection between the two biting incidents.

Edward's was worse than Joy's, she said, even though hers was bigger.

Because Edward knew that his biting was wrong, and Joy didn't.

Wednesday, December 10, 2008

Too Much

As I was fixing dinner last night, Rose and Joy were around the corner on the living room square carpet. All of a sudden I heard a shriek. At first I thought it was one of Joy's various high-pitched shrieky-squeals, painful to the ears of anyone nearby but otherwise fairly harmless. But it went on -- an entire breath-worth. Then the breath caught... and I thought "Rose?"... and then the scream began again.

It was Rose. She had been lying on her back on the carpet, with Joy lying tummy-down on top of her, face-to-face. And Joy had suddenly zoomed in and BIT her. A full-circle-of-teeth, hard chomp, on the side of her face just next to her left eye.

Remember the awful bruise-producing biting that Joy was doing to herself back toward the end of the summer?

That's what she did. To her sister's face.

I didn't exactly know what to do with Joy other than remove her from the situation. Much more concerned with Rose, to get her a nice icy Boo-Boo Bunny and a cuddle on the couch to start processing this new trauma. (Remember, the stinky-weapon assault at school was less than a week ago...)

Something I said about last week's school incident was hugely applicable to this one:
You think a skill is learned, or that boundaries are in control, and then whammo.

This really came out of nowhere. Now, Rose has been treating Joy a little bit like an oversize rag doll at times, dragging her around and hugging too enthusiastically and talking at her in an exaggerated annoying baby-talk voice. We've been at her repeatedly to be more gentle with her sister, to read Joy's cues that she doesn't like the situation, to let her walk away. This time, though, it didn't seem like Joy was trapped. She was on top and not confined, she could've just gotten up and left, but instead she chomped.

One difference between this incident and school is that Rose didn't get an apology this time. The girl at school had a vocalization and a sign for "sorry," and was able to trace a pencil over the letters of an apology note that her aide wrote out for her in yellow marker. We've not yet got a vocabulary nor a consistent approach for what to do when Joy does something harmfully wrong, particularly to a peer. How to begin to get her to understand, or even go through some sort of apology motion? Which motion, even, given that she's not really using any signs at all other than a highly inconsistent "more" sign?

Bloggy input welcomed!

I feel so bad for Rose. She's just having to put up with more than a kid oughtta have to do.

After supper, when things had calmed down and a Joy-therapist was in attendance, I took Rose out to help me shovel snow off the driveway. She told me that she was going to try to keep further away from Joy for a little while, a reasonable approach (and all to the good really, if it gets her to stop the rag-doll games).

And then she said,
But that doesn't mean I don't love her.

Oh, my beautiful daughter.

Sunday, December 7, 2008

More Daycare Awesomeness

Alas, we missed the daycare holiday party again this year, as we've done for several years straight, due both to bells and therapy.

But Lynda (the Wonder-Woman Daycare Lady) came through for Joy anyway.

Not only did the kids get holiday gifts from daycare...

Gift Bag for Joy
Look at Joy's personalized gift bag!

What utter awesomeness. Thank you, Lynda!

Friday, December 5, 2008


May I just say that playing handbells with the symphony orchestra -- which I just finished doing earlier this evening -- is a magnificent experience!

It's even nicer when the exacting, no-nonsense maestro introduces your group as "virtuoso performers."

Handbell ringersYes, one of the five women in this photo was me, a couple of years ago. You get to guess, if you don't already know me...

Now, only eight (maybe nine) more handbell performances to go in the next week and a half! Woo hoo!

P.S. JoyDad is such a trooper, keeping the home fires burning and taking care of the girls while I do all this.

P.P.S. Update: the show got good reviews (not to mention standing ovations both nights so far!)

Thursday, December 4, 2008

Assault with a Stinky Weapon

Perspective is a valuable gift.

Because of the presence of Joy in our lives, Rose and I had the tools to cope with what would otherwise have been a ridiculously overwhelming incident yesterday. (Poor Rose actually was quite overwhelmed at first, and with good reason.)

I got a call from Rose's first-grade teacher yesterday afternoon. She prefaced the conversation with the heart-stopping words, "We've had a bad accident...." Clutching the edge of my desk, I forced myself to breathe as I awaited word on the extent of Rose's injuries, and which emergency room I would be visiting shortly. Fortunately it was nothing like that! Here was the account:

Just before gym class, Rose had to make a quick trip to the bathroom. There was only one other child in there, in another stall. As Rose was washing her hands, the other child (a kindergartener with special needs) came bursting out of the stall with her knickers around her ankles and her hands full of poop. She ran at Rose, smeared some of the poop on Rose's shirt, and then threw the rest into the sink.

It sounds like my poor kiddo felt sadly assaulted, violated even. Poop is unpleasant stuff, and she hadn't done anything to this girl to earn any kind of retaliation whatsoever. Fortunately her teacher was able to soothe her, get the soiled shirt off and change her into her art smock -- a bright old tie-dye T-shirt of mine, that went quite well with her hot-pink leggings!

From Rose I learned that after gym class the kindergartener was brought to her to apologize, both with a note and a verbal "so..." accompanied by the "sorry" ASL sign. (She apparently has quite a few signs but very few spoken words.) When Rose told me about the incident as I picked her up from her after-school program, she did so without tears and told me that "the girl had a disability and doesn't always understand." I went ahead and verbalized the connection with Joy, reminding Rose that Joy wears onesies so she doesn't play with her own poop, and asking if Rose remembered seeing Joy smearing poop before. Yes, she certainly did remember.

My Mama-Bear persona is more than a little concerned about why this kindergartener was in the bathroom with no adult in attendance!

The Special-Needs Mama side of me, though, is more than a little aware that... well, poop happens. Unexpectedly sometimes. You think a skill is learned, or that boundaries are in control, and then whammo.

I did drop Rose's teacher an e-mail of thanks for the phone call and taking such good care of Rose in the wake of the incident, bringing gentle attention to the idea that "bad accident" was perhaps not the right term to use at the start of the call, and also including a line about being sure that a flurry of strategizing was underway about how to prevent any such future occurrences...

It's quite an experience to be on the other side of the special-needs mama / neurotypical mama divide for this incident. What a priceless perspective!

Rose, meanwhile, benefits immeasurably from that perspective and understanding as well. While a small bump on the head later in the evening (she ran into our birdfeeder en route to the car to go to piano class!) brought a few extra tears and feeling sorry for herself, she was in good spirits by bedtime, and slept peacefully through the night. As did I. And Joy too.

Wednesday, December 3, 2008

Photo Wednesday: Boundaries

No, no, JoyMama!

That little charmer was yours-truly in 1968, at the age of not-quite-one. Look at all those lovely little icicles on the Christmas tree! So ridiculously tempting! My parents obviously didn't quite trust me not to be too enthusiastic too close to the tree... hence the artificial boundary. (If you look closely, you can see that I managed to snag an icicle or two anyway.)

Christmas Tree 2008
I didn't exactly imagine that we'd still putting our Christmas tree out of reach with a four-and-a-half year old, but such is the way of things around here. The "safe" place for the little artificial tree (as safe as it gets, anyway) is on top of the stereo cabinet. No glass ornaments, just in case.

And yet, Joy's gotten so much better about boundaries in the past few months, starting with the oft-mentioned fence. It's gotten to the point that we are able to leave doors open to the rooms on the back hallway where she's not supposed to go, and she just... doesn't go there. Her therapists have commented on how Joy has even started to treat the square carpet in the living room as a boundary to be respected:

Carpet boundary
Maybe if things are going well next December, and Joy's dimmer switch for boundaries hasn't slammed in the opposite direction, we might consider a real tree. It's nice to be able to imagine that from here.

Meanwhile, Rose has been setting some boundaries of her own. Check out their bedroom door: Girls Club! Keep Out! Do not disturb, do not disturb! Stay out! Do not come in!

Keep Out! Do Not Disturb!

Sunday, November 30, 2008


Traveling with Joy & Rose has proven to be a whole lot easier lately, generally speaking.

When I started this blog back in July, we were just on the point of noticing a pattern -- that Joy's seizures got worse when we had long days of car travel. But then came this current string of seizure-free (81 days right now, touch/knock wood!) When we went to the northwoods in October, Joy travelled like a pro, and we had the same experience this holiday.

First leg of the trip took us to Thanksgiving Dinner at the home of AuntieS, where we contributed the pies:

Thanksgiving Pies
Next leg was to the home of my grandmother, Great-Grandma to Joy & Rose. At 99, she still hosts us overnight in her apartment and cooks for us and is so very interested to see the girls and hear about all the details of what's going on with us!

Joy was very comfortable at Great-Grandma's this visit. Everything about it was easier. For example, Great-Grandma noticed that Joy didn't cry AT ALL the entire visit. (No seizures means no seizure-fusses!) She initiated happy jumping-games with random adults, including an in-law relative whom she only met once before. She did almost no grabbing for forbidden stuff, and she did a lot of self-entertaining.

The last two points (grabbing & self-entertaining) combined into an interesting accident at one point during the visit!

Great-Grandma has a fun box of old, old toy building blocks. She has also tossed into that box a bunch of little clear plastic discs that come with the packaging for hearing-aid batteries. An example is on the left in the photo below:

Throwing Disks
Joy took a shine to the little plastic disks, especially once she discovered that they made a fun little clattery noise on the kitchen floor if she threw one down. She spent long stretches of time carrying little disks over to the kitchen and tossing, retrieving, tossing, retrieving.

Then during one of these games, when our guard was down, she looked up on the kitchen table and noticed a different kind of disk. Similar, yet larger and sparklier, like the disk on the right. It was a cut-glass coaster. And what a lovely crash and a shatter it made when she snagged it to use in her tossing game! As we galloped into the kitchen to remove her from the shards, she was trying to retrieve one of the larger pieces to make it happen again...

What a neat bit of generalization! So near, and yet so far. And she was so pleased with the results of the new toy, we had to work to keep her out of the kitchen after that point, as she obviously had it in her mind to reproduce all the fun that happened when she used the big sparkly tossing-disk.

Disk-shattering aside, though, in general it was a superb holiday!

Speaking of superb -- I got a most excellent blog-award last night, from Barbara at TherExtras. She has selected me for The Baddest Mommy-Blogger Award (remember, bad is the new good!)

Baddest Mommy Blogger Award
Here's what she had to say:
JoyMama is bad-to-the-bone. She was bad before she became a Mama - as evidenced by her willingness to EAT FIRE. And be photographed doing so. And post photos on her blog. After I asked for proof. Clearly, God prepared her for rare and wonderful parenting.

I'd be blushing, but when you're b-b-b-b-BAD to the bone, ain't nobody can make your face turn red.

Oh, and if you needed more proof that I'm a bad-mama rule-breaker -- as admitted previously, I generally don't really "do" tagging/awards. So I'm not passing it on, even though I know plenty of baaaad mommy bloggers. I'm sure the award will make its way around in due time!

Thursday, November 27, 2008

Happy Thanksgivi-versary!

Today is a two-fer of a special day.

Not only is it Thanksgiving (turkey and stuffing and pie, oh my!), it's also the 15th anniversary of the date that JoyDad and I tied the knot, way back in 1993.

Thanksgiving itself landed on November 25th that year. We held the rehearsal and dinner on Friday the 26th, then the wedding on Saturday the 27th, a wintry Chicago day with just a few snowflakes.

It's been quite the ride ever since!

Fifteen years, and so many blessings, too many to name. But we are particularly thankful for Joy, and Rose, and for one another.

Happy Thanksgiving, everyone, and especially to JoyDad, whom I love so VERY much!

Now it's off to bake those pies...

Tuesday, November 25, 2008

Look Away, Look Away

When I get Joy out of the crib in the morning, we have a little routine. I open the crib-tent zipper, open the blinds, greet her with a cheery good-morning. Then depending on how asleep or awake she is, I may pat her, help her untangle from the blankets, eventually help her to her feet.

Then we have a little hug, and I say the word "hug."

Then I repeat the word "up" several times, and give her a chance to request it (something she used to never miss, but it went away one day a couple months ago and hasn't come back yet).

Then I count "Ready, set..." and give her the chance to say either "up" or "go," another prompt she never used to miss.

Then I fill in the "go" for her, and lift her out of the crib with a kiss, and her pyjama-ed little feet go padding out toward the living room and/or breakfast table.

She does not look directly at me during this entire routine.

At least for this eye-contact avoidance thing, I have a frame of reference: John Elder Robison's book Look Me In The Eye, in which he describes how difficult (and perhaps over-rated?) eye-contact can be.

I don't have as good a framework for Joy's other frequent visual avoidance situation, where she declines to look at whatever task she's doing with her hands. I supposed I should say "whatever task she's being asked to do with her hands," because it's most noticeable when it's something an adult wants her to do: link pop-beads, put in a puzzle piece, buckle herself into her booster chair.

The booster chair is a fascinating example. She's very good at climbing into the chair herself, and retrieving the three straps that have to buckle together, and fitting the buckle together and pushing each side in with a pop! but with her fingers out of the way so as not to get pinched. Except she generally does it without looking, other than perhaps peripherally. When she accidentally gets one side of the buckle turned backward, it's well-nigh impossible for her to correct without seeing what's gone wrong.

How to help Joy look at what she's doing, enough to see it, learn it, achieve it?

Physically giving her head a gentle re-direct seems rather ham-handed and invasive, but it does at least get her to see that the buckle is turned backward or whatever, and correct it herself. Calling to her with voice-prompt, making a noise by tapping the item, waving the item in front of her face... none of them very effective.


Maybe she just wishes she were in Dixie -- Look away, look away!

Sunday, November 23, 2008

Elvis Says "No!"

Interesting language use this week with Joy.

We are still not really hearing words on a consistent basis, though there's been a fair amount of vocalizing. Our "Popeye Sighting" (when she used the word "ug-ug-ug" for "hug" a while back) has remained in the Elvis Sighting category -- I've only heard it once since. There are a few other words that come and go:

-- "gog-gog-gog" for doggie
-- "chuh" for chair (her mealtime booster-seat)
-- a few sounds from the farm See-n-Say, her current favorite toy
-- one blessed Elvis-Sighting string of "ma-ma-ma"

The most interesting recent Elvis Sighting to me, though, is her use of the word "no." She's been doing some deliberate "nuh-nuh-nuh" to mean no, but there have also been just a couple very clear, distinct, definitive "NO" utterances.

Here's the interesting bit -- unless I'm mistaken, they've all been said to just one of her 5 intensive-autism therapists (who reads this blog faithfully, so, hi!) Not to me, or her sister, or Lynda at daycare, or JoyDad, or her school district therapists. The context tends to be when this particular therapist asks Joy to give her something that she doesn't want to give. Joy has, on just a few occasions, pulled the item away and said no, clear as a bell.


She's also been responding better to "no" or "stop" from adults in a certain stimming situation she's been very persistent about. Which would be... umm, how to say this... oh well... humping. Pillows, stuffed animals, her blankets. She can get very... intense about it. Such a little sensory-seeker, our girl! It's not exactly that it's a problem, but it's the primary activity that keeps her awake when she oughtta be sleeping, and also pulls her into her own little world when she could be doing more useful, or interactive, or socially-acceptable things. So when she's not alone in her crib, we've been working on getting her to replace it with other activities.

It reminds us a little bit of another sensory activity that she was once very persistent with, which involved playing balance-beam with our low picture-window frame in the living room. There's just enough of a ledge, about a foot off the ground, for her to teeter on... and she went through a long phase of absolutely loving to teeter. Unfortunately she often teetered too far, and picked up lots of sad little bumps and bruises!

JoyDad's been the leader in these situations. I'm too much a softie, tending to think along the lines of "well, if that's the input she needs, I hate to get in the way." But JoyDad doesn't give up so easily. And, with repeated gentle admonitions (together with physical redirecting if need be), he eventually gets Joy to respond to a "No" or "Stop" voice-prompt. It eventually worked on the ledge-teetering issue -- I'm sure that he's the main reason the dimmer switch eventually slid to "off" and she stopped doing it altogether. With the "Joy loves her stuffed animals" situation, she is now willing to stop on voice-prompt. First she only accepted it from him, now she'll respond to the "no" from me (and I think from Lynda too) in that situation as well.

Yay, JoyDad!

Friday, November 21, 2008

A Single Goal

I should probably call this post "A Single Goal: or, More Cosmic Convergence."

Way back in August, Barbara wrote a post at TherExtras that criticized the hodgepodge that often results when too many experts are trying to accomplish too many things with a child:

What I don’t commonly see - or have not seen most of 30 years – are concentrated efforts to learn one skill at a time. I don’t hear or read families that do this. I’ve never seen an IEP that said “this school year Aloysius will be potty trained” or “Esperanza will learn to feed herself” – not at the preschool level, not at the kindergarten level, not at the elementary level.

How many high school students in special education do you estimate I’ve met who cannot do either toileting or feed themselves without assistance?

As I told Barbara at the time, Joy has a standard multi-faceted IEP, chock full of various goal areas for her therapists to address with her.

But even before the school year started, I had a conversation with Joy's school-district team leader. Unprompted, she told me that she had a thought for a single overarching goal for Joy this year, IEP complexity notwithstanding. That concept was: imitation.

Though it was a different angle than the single movement-oriented and task-oriented kind of goal that Barbara presented, there was power in that single simple-yet-not-so-simple idea of imitation. It has been a useful touchstone throughout the semester so far.

So then yesterday morning I once again had the chance to hang out with the incomparable Mama Mara. We got to talking about our respective blogs and I was musing on some of the posts I'd been meaning to do, and mentioned the single-goal thing. Her eyes lit up with cosmic-convergence connectedness, and she told me about her son's case manager at last week's parent teacher conference asking her the single-goal question: if you picked just one goal for your son this year, what would it be? I am terminally impressed that Mama Mara had an answer at the ready: that he would be able to get a handle on the "stuff" he needed to get through the day, keeping track of coat and backpack and such.

And thus do good ideas meet, shake hands, and ripple back out into the blogosphere...

Thursday, November 20, 2008

Evolving Definitions

So, what IS autism, anyway?

Not a rhetorical question, that.

I suppose that on some philosophical level, there is a knowable "something" that is the quintessence of that which we call "autism."

Problem is, we haven't managed to catch up to it yet, either from a causality standpoint or a definitional standpoint.

When I first began to learn about autism, I took a line of thought that I think I've since outgrown... I hung my hat on the clinical, psychiatric definition of autism that formed the basis for Joy's diagnosis. That definition comes from the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. The most recent edition, the 4th edition, came out in 1994, and is known as the DSM-IV. I referenced in a previous post the peculiar combination-platter approach that checks off certain criteria in certain groupings to constitute an autism diagnosis:
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

Uncle Schnirelmann obligingly contributed to the comments of that post a calculation of the number of potential combinations!

Here's the thing, though. This particular combination-platter that "is" autism has only been on the books since 1994. Autism was first added to the DSM in 1980; PDD-NOS (which broadens the autism spectrum considerably) was added in 1987; the autism definition expanded yet further in the current 1994 version, including the first mention of Asperger's.

Is autism in-and-of-itself really only the latest psychiatric definition? Did autism an sich (German for in-and-of-itself) actually change? Surely a reference book doesn't have quite that kind of power, right?

For anyone still hanging his or her hat on the clinical definition, hold on to the brim, because the world of psychiatrically-defined autism will be changing again, in not too many years.

The new DSM-V is due out in May 2012. The American Psychiatric Association started the wheels of the new edition turning as far back as 1999, in collaboration with the National Institute of Mental Health. There have been conferences and task forces, and starting in May 2008, 13 different work groups were convened to deal with different areas in the purview of the DSM. Autism is covered by the Neurodevelopmental Disorders Work Group, chaired by Susan Swedo, MD.

I didn't know all this off the top of my head, of course; got it from the American Psychiatric Association web site on the upcoming DSM-V. I started poking into this due to a blog post called Sausages and Legislation by afbh at Whose Planet Is It Anyway? The post references an LA Times piece from earlier this week, regarding a dispute between psychiatrists as to whether the process of assembling the DSM-V is going to be primarily a transparent process, or a closed-door process.

So that got me wondering, what exactly do we know about the status of the autism definition revision at this point? And that led me to this brief Report of the DSM-V Neurodevelopmental Disorders Work Group, dated November 2008.

The report lists three main areas of discussion for the work group:

1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.

2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

Then there are eight additional questions, and various subcommittees. I'm hoping this gets wider play in the autism blogs -- Kristina at Autism Vox has started that ball rolling. I'd like to see someone eventually take it in turn to invite discussions of each of the points and questions separately. (Not to worry. I won't inflict that on my particular readership!)

I will just comment a bit, though, on the one of the first three points that jumped out at me, and that's point #2, about the interface between autism and other genetic or biologically-definable conditions. The dual-diagnosis thing has been of particular interest to me, given Joy's combination of autism with linear nevus sebaceous syndrome. In our case, we've been conceptualizing Joy's autism as falling somehow under the LNSS umbrella. But I've also heard people referring to their quests to "rule out" autism by testing for genetic known-factors like Fragile X, and I've wondered why it couldn't be both -- especially since there's only one lone genetic exclusion in the DSM-IV, and that's Rett syndrome.

It's always seemed strange to me that Rett should be singled out, and at least mildly concerning that if the list of exclusions were to grow explicitly, it could have a massive impact on the eligibility for autism services of people who also have Down Syndrome, or Fragile X, or LNSS, or whatever. The work group report implies, though, that there's discussion about taking it in the other direction, maybe with explicit inclusions?

Fascinating stuff. I'm hoping that the official discussion stays as transparent as possible.

Wednesday, November 19, 2008

Deep Thoughts

Gentle geographical gradients are ever so much more noticeable when running than when walking.

They're even more noticeable when attempting to run while pushing a jogging stroller containing a sturdy four-year-old.

That is all.

Monday, November 17, 2008

Who Loves Joy?

Last night at Sunday School I got to fill in as Joy's volunteer aide for part of the session. She sat in my lap on the story-rug next to the three little pre-school guys (including her former day-care buddy) who are her classmates, while the teacher read Guess How Much I Love You, a board book by Sam McBratney in which Little Nut-Brown Hare and his father talk about how very much they love each other! Then we had a conversation about "who loves you?" The kids were finding it easier to think about "who do you love?" but the teacher managed to get some thoughts out of the guys about how their parents love them, and their siblings probably do too, etc.

Then it came Joy's turn and I gave her a great big hug in my lap, while asking the guys if they could think of who might possibly love Joy so very much.

They thought for a second and then Joy's former day-care buddy blurted out, "I love Joy!"

All together now: "Awwwwwww!"

And -- the lesson toward which we were working -- God loves her too. So very much.

All the way to the moon and back, in the words of the story.

And God loves her day-care buddy, and her classmates, and her mama, and her teacher...

And you, too.

Sunday, November 16, 2008


I recently finished reading an excellent book, Mountains Beyond Mountains by Tracy Kidder. It's a non-fiction account of a dedicated (and generous and brilliant and eccentric) physician, Paul Farmer, and his work among the poorest of the poor, first in Haiti and then beyond. His work in Haiti eventually blossomed into public-policy impact for how tuberculosis (TB) and AIDS are treated among the poor worldwide.

Kidder is a masterful storyteller, expert at bringing up details that reappear later in the book as he weaves his themes together. One such detail had to do with a Haitian woman whom Farmer treated for TB.

In the case of TB, a major challenge is that the treatment regimen must be followed faithfully for a long time, or the disease simply becomes resistant to that particular drug. Conventional wisdom for Haiti is that it's hard to get patients to buy into this necessity because they want to attribute disease to Voodoo curses instead of micro-organisms, but Farmer found that when enough of their basic poverty-related needs were being met, his patients did a fine job of keeping up with the medications. Kidder related an encounter with this woman who had accepted the idea of the TB germs and did well at sticking with her meds, but then surprised Farmer by telling him later that someone in the community had cursed her with the TB and she was going to take revenge. When Farmer called her on it, she responded (in Creole), "What, are you incapable of complexity?"

This is a helpful thought for someone like me, putting together a worldview that has room for both allopathic & non-traditional medicine, plus mystery and miracle and faith, that maybe needn't feel bad for a touch of superstition as well.

But no Voodoo for me, thanks anyway!

Accepting the complexity of the seemingly-contradictory may also be a helpful concept in threading the ongoing controversy regarding the nature of autism...

Been thinking about that, will post more another day.

Meanwhile, I do recommend Mountains Beyond Mountains. Much food for thought about the roots of poverty, and the interconnectedness of the world, and what one dedicated person can do. (I also recommend Three Cups of Tea, by Mortenson & Oliver, which I read a year ago -- another account of one dedicated person making a big difference on the other side of the world, in which mountains also figure both literally and metaphorically! Connections, connections!)

Thursday, November 13, 2008

Taking the Lane

I've mentioned a couple of times that I have a rather nice bike-commute to my part-time job. It takes about 20-25 minutes each way, most of it is either bike lane or bike path, some of it is lakefront, and there are just enough inclines to make it a bit of work without being too discouraging.

The most dangerous bit is a left turn that happens near our house, crossing a busy street. Left turns can be tricky. In general, the safest way is also the scariest -- you have to leave your bike lane, merge into traffic and act like a car for a bit, blocking other cars until you've completed the turn.

This maneuver is called "taking the lane."

Now, one doesn't HAVE to take the lane. The more timid route is to come to a dead stop in your bike lane, wait for all the traffic both ways to pass, and then quickly cut across the whole street. Trouble is, there may be other bikers behind you, who may or may not want to turn themselves.

Alas, my bike commute ends for the season when the Daylight Savings switch comes around in the fall, even if the weather is still good. Once we "fall back," the left turn near our house on the way home begins to happen after sunset. And I don't play traffic games on a bicycle when dark is falling!

In past years, this is when I begin to turn into a hibernating pudding. At the time I most need the exercise (yes, I've finally realized I do have some seasonal-affective issues, on top of the holiday feastings), I lose my best regular workout. Fortunately this year, the Couch to 5K training program came along just in time. I'm midway into week 3 now, and it still feels pretty do-able. We're also getting an exercise bike to go with the treadmill. Maybe after the 5K I should train for a triathlon? Nahh, let's not get ahead of ourselves...

Anyway. These past few months I've been blogging have been an interesting "take-the-lane" time for me in other ways too. I've found myself to be more of an idea person, and being unusually forward in acting on those ideas. Things as small as -- getting in touch with the principal & PTA co-presidents to inquire whether there might be some way to get the city to do a better job of snow-removal on the sidewalks across from the elementary school, which was a real pain in the patoot during last year's record snowfalls. (My e-mail turned into a PTA board meeting agenda item; people-who-know-people inquiries are underway).

Two potentially larger things are spinning with my plates now too. Remember my dad's lovely review of beyond.words by Suddenly I got the itch to try & bring the production to my city! I've been in touch with the director, and the booking agent, and some contacts both in the arts & autism community around here... it may or may not happen, particularly in this economic climate, but wouldn't it be too cool?

Second, I've been taking some steps on my idea of creating an online information source and support group for linear nevus sebaceous syndrome, something that is sorely lacking on the web right now. I've got a potential partner lined up for maybe providing the domain & web hosting, and I've collected a bunch of information from the medical library -- working on a draft of the site, in all that free time of mine.

Lots of "taking the lane" going on, even with the bike commute over for the year! Now that I've told you all this, it gives me extra accountability to keep moving on these projects. I'll let you know.


And in further updates: we're doing better on the sleep front, helped by melatonin, nap management, a white noise machine, and we're now waiting/weighting on the weighted blanket to arrive by mail. Maybe the dimmer switch is moving in the right direction too. We can hope.

And yes, we made two months seizure free! Woo-hoo! Neurologist appointment later this morning (I really must go get ready for the day)... we'll see what that conversation brings.

Monday, November 10, 2008

Getting Giggles, Take 2

Way back in August I posted how Joy had a reputation at daycare for getting giggles.

We've just found a new context, with a zombie-parents twist.

Joy's difficulties in getting to sleep are continuing, particularly at home. She is managing to nap some at daycare, whether due to peer pressure or her Peapod Plus travel bed or her borrowed weighted blanket (top priority for this week - chasing down our OT to give a weight-recommendation so we can obtain such a blanket for home too).

I almost thought I was seeing a pattern where the few nights she was sleeping through were happening after those daycare naps. That pattern broke with a crash on Friday night, though, after a deep 2-hour daycare nap. That night she almost didn't let the melatonin put her to sleep at bedtime, then woke up at 12:30. I thought I'd try something different, and took her to attempt co-sleeping in the guestroom. She didn't do more than drowse the rest of the night (though at least she was fairly quiet), and I didn't want to take her back to the crib to hoot & holler until JoyDad was up for the day, because that would killed the rest of the night for BOTH of us.

Anyway. We decided to try cutting out naps altogether for the weekend. Not that she'd been actually napping at home for quite a while, but at least we'd been putting her in the tented crib for "quiet time" for a chunk of the afternoon.

Saturday, after playing outside in fallen leaves instead of napping, Joy got very snoozly and almost fell asleep on the floor in the late afternoon, but perked up some after dinner. Then as bedtime approached, she started getting giggly. Wild, over-the-top giggles. At first it made us laugh too, until it was clear that quiet lullabies and rocking and even the melatonin weren't causing the giggles to stop. So we just put her to bed, where she giggled and thrashed for about 5 minutes before crashing into sleep.

Slept all night, it was very very nice!

Tried it again on Sunday. I realized that I'd heard those giggles recently before. They had happened when she'd awakened at 2:30 or 3am on previous nights, and had been vocalizing for 2 or 3 hours -- the vocalizations would change to those wild giggles. Overtired, perhaps?

Joy's church volunteers reported that she was quiet, tired, low-energy all evening. It wasn't until we got her home and started getting ready for bed... that the wild giggles began again.

This time they didn't stop when she went into the crib. It took something like an hour and a half to crazy-giggle herself to sleep, which wound her parents up enough to push their sleep even later than that. But at least she slept through, which was something.

The saga continues! Tee hee hee hee! MuuuuAH-HA-HA-HA! Zzzzzzzz....

Saturday, November 8, 2008

Of Flu Shots and Superstitions

Well I ain't superstitious,
But a black cat crossed my trail...

-- bluesman extraordinaire Willie Dixon

Generally I prefer to think that superstition and medicine shouldn't have anything to do with one another.

As I've said before, I'm an evidence-based kind of gal, and I like to have a medical team with the same basic outlook.

On the other hand, when I updated Joy's excellent neurologist on her lovely on-going seizure-free string (going on 2 months this coming Tuesday!), he glanced around and said "Quick, touch wood!" We laughed together as he jokingly allowed as how pediatric neurology had more to do with superstition than one would guess...

OK everybody, touch wood for us! Quick! Doctor's orders!

I also found myself doing something perhaps related to touching wood at Joy's recent primary care appointment. I got her a flu shot. And I requested a thimerosal-free dose.

Now, intellectually I am thoroughly convinced by the studies that, time after time, fail to find any connection or correlation between thimerosal and autism. In addition, if there were any connection, by now we should be seeing decreases in ASD diagnoses since thimerosal began to be taken out of vaccines as far back as 1999 -- and that drop has not happened.

So why did I ask for the thimerosal-free formulation for Joy?

Touch wood! I don't have any better reason than that. And I'm a little bit peeved at myself, and a lot frustrated at the anti-vaccine movement that has managed to instill this gut-level unreasoned uneasiness, even in me. An evidence-based kinda gal, or so I like to think. Emotions are such pesky beasts, aren't they?

The flu shot, recommended but not required, is about the last holdout for the regular use of thimerosal as preservative in childhood vaccines. The latest CDC guideline this year has expanded the recommended population for flu shots. They now recommend that everyone from 6 months to their 19th birthday, and also everyone over 50, get the shot. I think it used to be only up to age 5 for kids. Poor Rose, age 6 this year, got her shot this morning (didn't feel the need to specify formulation for her). Fortunately we didn't have long to wait in the doctor's office for her to stress about it. She cried almost as little as Joy this year, which is to say just a few whimpers -- Rose's whimpers were before the shot, Joy's were after.

JoyDad and I didn't whimper at all when we got ours at our respective workplaces. Or so he tells me, anyway.

Funny postscript to this year's flu shot adventure. Rose came in and told JoyDad that she'd had her flu shot.

JoyDad asked, "Where did you get it?" thinking left arm, right arm, leg, derriere, where?

Rose replied, "At the doctor's office!!"

Wednesday, November 5, 2008

Zombie Parents

JoyDad and I are going to be zombies again today.

No, we aren't seeking braaaaaains. (Well, OK, maybe we need those too.)

Our desperate zombie-moan sounds more like "SLEEEEEEEEEP!"

I referred to sleep-deprivation playing a role in the run-up to Women's Retreat this past weekend.

Here's the deal. Over the past couple of weeks, Joy has been fighting going to sleep. The way she does it is through stimming, both physically and vocally. Loud vocals. Hoots and yelps and giggles. Did I mention LOUD?

It started with just naptime, which is not that surprising because lots of 4-year-olds are ready to give up naps. But then it transferred to bedtime in the evening too, and also to wake-ups in the wee small hours. She can keep it up for hours on end. And when she's doing that loud vocal stimmy stuff, her parents don't sleep.

We have been able to manage the bedtimes using melatonin. Unfortunately, that doesn't seem to affect the 2:30 or 3:00 am wakings. We just asked her doctor for the OK to bump up the dose Monday night, and she did sleep through Monday night. Last night, though, she started up at 3:30am. Of course we'd been up to see the election returns and the acceptance speech... I got up, gave her some Benadryl, rocked her till 4am, then put her back in the crib still awake. I think she might have dozed a bit, but then started in again.

Therefore, JoyDad and I have basically been up since 3:30am. Again. With headaches, and fighting our colds.

At least Rose sleeps through it all, though I have no idea how, because they share a room!

My hunch is that this will eventually be like the whole biting thing, and the dimmer switch will eventually slide back the other direction.

Till then, though, this is taking a pretty big toll.

Ideas welcome! Thank you in advance for any input...

And in regards to the events that kept us up watching the TV, I'd like to close with a line from a pre-election prayer that came around by e-mail, from the Mennonite Church USA Peace and Justice Support Network.

We pray that all candidates, both those who are elected and those who are not, will seek Your justice and Your peace in the world.