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!