New Year's Reflections: Identity

"On the Internet, nobody knows you're a dog."
-- Cartoon from the New Yorker, July 1993

"Facebook makes cyberspace more like the real world: dull but civilized. The masked-ball period of the Internet is ending. Where people once led double lives, real and virtual, now they lead single ones again."
Time magazine, Dec. 15, 2010
-- "Person of the Year 2010: Mark Zuckerberg"

The turn of the year is a traditional opportunity for introspection, taking stock, looking back and looking forward. In this medium, I tend toward what I call "bloggy navel-gazing" -- reflections on what this Elvis Sightings enterprise means for me (and about me) as Joy's mother, JoyMama. Of course the blog is framed around Joy herself, but she's not the one with the words to speak for herself. Someday, someday! but till then, I'm afraid that most of what you're getting here is me.

The other evening JoyDad and I had a holiday date-night, dinner and a movie thanks to the babysitting team of Grandma Joy and GrandpaJ. Our movie of choice was The Social Network, a fictionalized account of the founding of the wildly-popular online social-network known as Facebook. Well-paced show, zingy dialog, compellingly plotted, the two hours flew by! The lead character, Mark Zuckerberg, co-founder and billionaire CEO of Facebook, was a geeky Harvard undergrad when he launched the first version of Facebook in 2003. While Facebook was a student-members-only operation for its first three years, in 2006 it expanded to anyone over the age of 13. Facebook now boasts over 500 million users worldwide, most of us under our "real names" -- because much of the point for Facebook users is that you want your friends and acquaintances to be able to find you.

The movie took as its frame the real-life legal battles over Facebook's origins, but played very fast-and-loose with Zuckerberg's character. To hear the movie tell it, the core motivation for the creation of Facebook had to do with Zuckerberg's inability to hold onto a certain girlfriend (or any other friends), as well as a desire to belong to Harvard's exclusive social circle. According to the Time article, however, Zuckerberg is still together with his Harvard girlfriend, and has devoted friends as well as a strong family, and founded Facebook because it was just such a cool thing to do!

The dance between real-name identity and pseudonymous identity has been of interest to me since I first started Elvis Sightings under the pseudonym JoyMama. At the time, I'd say that maybe half the autism-parent blogs I followed were under pseudonyms. About a year ago, there was even a cluster of three or so blogs that had started out with real-names and then made a retroactive switch to pseudonyms.

But lately it feels like there's a trend toward blogging under real-names. The new bloggers I've been adding to my list are predominantly real-name bloggers. I'm also one of very-very few contributors to The Thinking Person's Guide to Autism to contribute under a pseudonym.

I'm mostly happy with staying pseudonymous. For Joy's protection and my own, I don't want my real name to be too easy to connect to the blog, particularly since it's an unusual enough name that pretty much all the Google hits on it are really me -- and I've been leaving trace-able real-name trails online since about the time of that New Yorker cartoon. (Unlike a fellow I once met who shares a name with a world-famous Olympic athlete, who commented that he could post anything he wanted under his real name because it gets buried under famous search results!) But many of you knew my real name before you visited this blog, and I've shared it with others who have become bloggy friends.

Here's where I think the dance gets interesting. In general, I think that people tend to equate online anonymity with inauthenticity. After all, on the Internet nobody knows you're a dog! You can create any identity you want for yourself under a pseudonym -- or say awful things without having to own the consequences in real life, if so you choose.

On the other hand, face-to-face communication isn't free of identity-creation either. We make choices all the time about which of our thoughts we want to share, how we want to present ourselves, what face we want to show the world. And, as a recurring pseudonymous presence, JoyMama has to own what is said on Elvis Sightings and in comments on other blogs. I can't hit-and-run under my established pseudonym, not that I'd want to!

JoyMama is me. My reflections here have a great deal to do with my identity, even if they don't have my real name directly attached. In fact, readers can learn a lot more about the real me on this blog than through occasional casual face-to-face encounters -- or, for that matter, than by reading my real-name Facebook status updates. I wonder if that's maybe the best of both worlds: the protection (and fun!) of the masked-ball that the Internet can be, yet also the authenticity of a real-person identity, firmly attached to the pseudonym.

That identity is not a static entity. Joy is a work-in-progress, JoyMama is a work-in-progress, so are Rose and JoyDad... and all of you. I expect Joy and myself to be life-long learners, and I'm looking forward to blogging about what we learn in 2011.

If you'd like to get updates on our ongoing Elvis Sightings evolution via Facebook, you can click on the "Like" button in the right-hand sidebar. Be advised, though: it won't help you figure out my real name, but it will (probably) give me yours!

Happy New Year!

Three Christmases Down, One to Go

We're a week and a half into a two-week Christmas holiday, and all things considered, it's going pretty well. The biggest "considered" is that all four members of the immediate JoyFamily have been feeling less-than-healthy. JoyDad and I have had colds; Rose had an ongoing bout with abdominal pain that made us think "appendicitis" and also made us think "stressing out" but cleared up with a course of antacids; and Joy had fever & upchucks on the Tuesday before Christmas, followed by a week of -- well, let's call it "bowel disregulation." Merry, merry.

But, as I said, things haven't been too bad for all of that. We made it through a snowy drive on Christmas Eve to AuntieS' place for the first Christmas celebration: JoyDad family fun, and Chicago pizza from Lou Malnati's, and a big pile of gifts. Then we went home for a nice quiet Christmas Day. Here was the scene before we dug into the pile for Christmas #2:


We had been very careful not to bring out any presents before that morning, nor to even hang the stockings, because that living-room space is very much Joy's territory and we worried whether the stockings would survive. Funny enough, after the unwrapping was done, we hung the stockings back up just to be a little festive, and Joy let them hang. They're still up! as is our tree, which she's tall enough to bring down with one grab if she wanted to! as are the Christmas cards on the back doors which she can easily reach and hasn't even touched!

Christmas #3 came with Grandma Joy and GrandpaJ (my side of the family), who drove up from Kansas on Monday. The girls hadn't seen these grandparents since we went to Kansas for Easter, but Joy remembered, all right. She ran up and gave Grandma Joy a huge smiling unsolicited hug. Ahhh! We had yet another round of gifts on Tuesday morning, followed by a sledding outing. Both grandparents took their turns on the sleds going down the long hill, perhaps not surprising when you consider that Grandma Joy celebrated her 70th birthday earlier this year by going sky-diving...

Anyway, we've got a couple more days of visit from the Kansas grandparents, and then will have Christmas #4 just after New Year's with the grandparents on JoyDad's side. It will be hard to go back to the post-holiday existence after all these treats.

Here is Joy with a few of her treats -- a new Christmassy Joy-outfit, and a lovely stimmy fleece boa that I made her, and a set of mis-keys that I had carefully selected in hopes of coming "close enough" to my own car keys that they could serve as a substitute. (Who was I kidding? When is "close enough" ever good enough for our kids when they've got their obsession on?)


Another favorite gift with a Joy-tag on it came from AuntieS on Christmas Eve -- another stimmy delight, a pin-art toy. Joy has had to share that one, though. Here is Rose demonstrating some dramatic faces:

The Scream

The Grin


Even JoyMama got into the act, demonstrating here her dissatisfaction with a lip-enhancement surgery gone just a little too far:


(I kid, I kid!)

Squishy-face

JoyDad got Chicago-Bears gear (it was available at massive discount this year!)

Rose got a Barbie and an Only Hearts doll (the one named Lily Rose).

JoyMama got a hot bath and a nap (Christmas BLISS.)

And Joy got squishy-face.


She pulls your hand toward her face, asking wordlessly for pressure across her forehead or cheekbones. Then when the squishy-face has been given, a great big grin erupts. And she signs "more" or pulls your hand again.

Not that she didn't like the presents. This year, she tolerated quite nicely being asked to tear the wrapping paper, again and again.


She's enjoying the jack-in-the-box, and the light-up ring-stacker, both of which she's been playing with functionally on and off through the day. Even more so, though, she has enjoyed a particularly long & shiny ribbon... and a piece of bubble wrap... and the lid to a package of greeting cards. And squishy-face.

We are all joyful here today, in our own ways.

May joy be yours as well. Merry Christmas!

Practicing Christmas

It started out with Rose and a gingerbread house from a kit. This is the third year we've done any such thing. The first year, we bought a house in pieces-parts. Took a while to get it properly constructed, and then Rose wanted it to perfectly match the picture in the instructions. Which meant that mama did all the icing, and Rose would put on the candies.

Second year, we got smart and bought a pre-constructed house kit. Rose actually started piping some of the icing herself, on the less-challenging bits.

This year, she designed and piped the whole thing (except for the door which she asked me to do).


Well, there was quite a bit of icing left, which got me thinking. What if I made a smaller house with graham crackers so Joy could do some decorating?

Joy wasn't thrilled with the sit-down work, but did a pretty good job of poking some M&Ms at the icing blobs. Letting go of the candy was a tough part. But she didn't much seem to mind letting the candies become part of the house, as long as she got to eat a few!


Then today -- since einmal ist keinmal -- we did another one. Rose did the icing blobs...


and Joy poked on the candies again, with some guidance.


I was delighted at how Joy seemed to realize this time that she needed to let the candy go so it would stick!


Then, for a bit more Christmas practice, I set her up to help me stir the peppernut dough:


I think we've got some good Christmas practices going here.

Christmas Comes but Once a Year

Home then to the laden table;
Ham and goose and pints of beer,
Whisky handed 'round in tumblers,
Christmas comes but once a year!
       -- Christmas in Carrick

Einmal ist keinmal.
What happens but once might as well not have happened at all.
       -- German saying, quoted in
The Unbearable Lightness of Being


We decorated our Christmas tree last week, at Rose's insistence. Our older daughter has been the nudge for quite a bit of the Christmas preparation that we've done so far, including a gingerbread house (from a kit) that she decorated almost entirely by herself.

I wrote about Joy and our tree last time the holiday rolled around. We trimmed our little fake tree without her assistance in 2008. My reasoning for doing it that way: I was afraid that she would be confused by being first allowed to touch and decorate the tree, and then having it be off limits for the rest of the season. We were not at a point last year where she could be trusted not to stim on the branches, or grab the ornaments, or knock the thing over altogether -- though I did have hopes for Christmas 2009! So the tree went up on the stereo cabinet, substantially out of reach, trimmed with non-shatter ornaments just in case.

Well, here we are approaching Christmas 2009. And Joy is just as perseverative when it comes to ribbons and stringy-things (though not her hair right now, thank goodness!) and perhaps even more mischievous about deliberately getting into things she knows are "no."

So the tree is up high again, once more decorated with non-hazardous trimmings.


This year I felt differently about Joy's participation, though. It's not fair to shut her out from this activity that Rose enjoys so much, and that is such a holiday tradition... surely there could be a way to modify the activity such that it could be at least somewhat successful for her, and not too confusing?

Rose and I unpacked the little tree in my bedroom, put on the lights (colored ones this year), and hauled out the ornaments. I enlisted her help in choosing six ornaments for her sister to do. They had to be not too heavy, with big enough loops on the holders to be not too challenging to put on -- and the ornaments couldn't be too stimmy-stringy themselves.

We found six that fit the bill, and then carried the tree out to the living room, where Joy (supported by her barista) helped put on those six ornaments. She wasn't in a great mood and didn't really "get" it, I think. But she at least cooperated. And then the tree went back into the bedroom with me & Rose, and we trimmed it all up the rest of the way, and then carried it directly to its display perch on the stereo cabinet. Joy is tall enough to reach the lower branches now, a bit of a concern. I've only caught her in one stealthy reach for the tree, though, and all it took was me saying her name in the "stern voice" to get her to back away.

One iteration of putting on a few ornaments.

When other than on holidays do we ask of Joy that she learn things in ONE annual iteration?

At Halloween, for example, her WonderWoman daycare lady Lynda does a great job of setting up a trick-or-treat practice at the daycare. But it, too, is a one-time shot, and some years it falls on a day we're not there. So Joy gets maybe one practice, then one shot going out to knock on doors and beg for candy in costume. And then it's a whole year before we require it of her again.

Talk about confusing!

Easter baskets? Once a year.

Birthday presents? Once a year.

Trimming the tree? Once a year.

Yet, how does Joy learn routines? Repetition, repetition, repetition.

She's gotten very good at getting into and out of her seat in the car, and helping to close the car door. We do that daily.

She has learned to use fork and spoon, and is making progress at drinking from an open cup. Meals come three times a day, with two snacks.

She is learning to turn noisy-toys on so that she can use them. We enabled this with a full-court press, communicating to her entire school team and autism-therapy team that toy-turning-on was a priority. It didn't take her long under those conditions to get the hang of it.

Einmal ist keinmal. If you're only going to do something once with Joy, perhaps you almost may as well not bother. One iteration is not enough to stick.

It's been different with Rose, of course. We've seen a steady progression from one year to the next of these once-annual rituals. At Thanksgiving she's gone from stirring the pumpkin pie filling, to dumping in the measured ingredients, to learning to crack eggs, to (this year) actually learning to crimp the edges of the homemade crust!

On the other hand, Rose hasn't learned it all in one shot either. It does take at least the annual repetition.

For Joy, maybe we need to think about it as a different timeline, a different number of repeats.

Of course, I don't really believe that einmal ist keinmal in a philosophical sense. Just look at what we're about to celebrate, the singular, holy miracle of God-with-us, Emanuel. Once and for all...

Then again, I think we need the annual celebration too. We need to remind ourselves anew, experience the wonder once more and yet once more, coming back to the story again and again.

I still don't have a sense of how to communicate that meaning of Christmas to my younger daughter.

But I do think that perhaps next year, I might figure out how to set up a practice-tree elsewhere in the house that is Joy's alone, with ornaments selected just for her, that she can hang again and again.

Random Tuesday Thoughts

I think I'm still on a Thanksgiving-turkey tryptophan buzz. Hope you're up for some randomness, 'cause that's all you're getting today!

• What a whirlwind of a holiday weekend! Much baking of pies Thursday morning, much gobbling and chattering Thursday evening at Auntie S's place. Different lodgings both Friday and Saturday nights, several sets of family gatherings, whoo!
  
  
• I'm not going to see the movie "Four Christmases." Who needs to go to the theatre to experience multiple family holiday gatherings stacked one atop the other?
  
  
• Joy was a super little traveler. She's so content to ride along in her carseat, especially if we toss her a toy now and then. Rose actually demands more attention than Joy, can you believe?
  
  
• Thursday night we stayed over with Uncle Marathon & Auntie Save-the-Tatas. They have a brand-new kitten that Rose just swooned over (the more so because I have allergies so she can't have a kitty of her own). Joy was willing to give the kitty a pat or two, but she REALLY wanted to play with: the cat toys. We came home with a toy which has a ball & jingle bell on top of a spring growing out of a stand. I am not exaggerating when I say this toy had a catnip-like effect on Joy!!
  
  
• Our Friday visit was to my grandmother, who turned 100 last May. Our visit happened to fall during her move from her retirement apartment across the street into an assisted-living apartment. I want to be not-quite-ready to move into assisted-living when I'm 100... I hope that her new place, bright and sparkling, begins to feel homelike soon.
  
  
• Grandma took us out to dinner Friday night. Joy drank from an open plastic-glass at the Old Country Buffet! Without spilling a drop! Two glasses of lemonade and was asking for more!
  
  
• Saturday we got to see Auntie RatM and Auntie Meerkat -- it had been a long time! We got to take them to the park to play with the girls. Rose swirled herself down the firepole over and over, with great drama. Joy let me guide her in climbing up a somewhat wobbly web-like climber up to the slide platform. What a trooper.
  
  
• More Joy awesomeness, quoting from her OT's update last week: "This kiddo is pretty amazing at motor planning those activities which she's motivated for! ... When [Joy] wants something she's crafty, smart, clever, strong, and fairly precise with her movements. What a great kid!"
  
  
• When I read an update like that, it's no wonder I get confused about labels. In a good way, though.
  
  
• I wonder how many blogposts are waiting for me in my Google Reader? Maybe I'll go find out.

Three Cheers for the Red, White, & Blue

Except for when it's my rats'm-frats'm LEFT FOOT.



I thought I'd just stubbed my little toe on the corner of a wall yesterday morning. But there's obviously a bit more than just your standard toe-stubbing going on here.

The irony of JoyDad's left foot just now allowing him to run, while my left foot will prevent me from running this weekend, is not lost on me.

Happy rats'm-frats'm 4th of July, all!

A Small Slip-Up

Exciting times here at the Joy household. My dad and stepmom are here visiting for several days, and the girls are getting lots of grandparent attention.

Last night, though, we had a little bit of attention-wandering. Grandpa Needs-an-Alias and JoyDad were out purchasing pizza, GrandmaJoy (who actually does share a first-name with her grand-daughter!) was playing in a bedroom with Rose, I was swirling around in the kitchen getting ready for the meal, and Joy was quietly watching a video in the living room.

Too quietly.

I had left a basket of fruit unattended on the dining table, and she had snagged a banana.

We have not yet taught Joy to peel bananas.

She was consuming it anyway. Peel and all. She was more than half-way through by the time I caught her. Blecchhhhh!

At least she's not a picky eater, right?

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.

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!


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!"


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...

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.


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


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:


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:


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!!)


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.

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...


Look at Joy's personalized gift bag!

What utter awesomeness. Thank you, Lynda!

Generalization

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:


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:


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!)


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!