Songs of the Season, Part 3

Christmas Eve, and the final installment in this Songs of the Season series.

I wasn't the only one to set up an annual holiday letter with a musical lead-in this year. GrandpaJ and GrandmaJoy sent an entire letter premised on the blessing of music in their lives in 2011. Their letter began with a story that involved their granddaughter.

Both grandparents volunteer regularly to visit inmates at a correctional facility. GrandpaJ has been matched with one fellow in particular for quite a few years now, developing a cautious but meaningful relationship over time. In early December, this man sang a solo at the annual prison Christmas banquet, a "hearty rendition" (according to GrandpaJ) of O Holy Night.

He dedicated it to his friend's granddaughter Joy, and asked everyone to pray for her.

A dining hall full of prisoners in Kansas, praying for my daughter!

How marvellously unexpected, topsy-turvy, upside-down.

And all in celebration of the topsy-turvy arrival of God-With-Us, a baby born in an out-building among the farm-animals, while a dazzling host of angels brings the astonishing news to ordinary shepherd-folk in the fields.



Fall on your knees, O hear the angel voices!

Songs of the Season, Part 1

As the introduction to our annual Christmas newsletter this year pointed out, "the local oldies station has switched to 'all Christmas music, all the time.'" Christmas, more than any other holiday, comes with its own musical soundtrack.

The JoyFamily appreciates the holiday soundtrack -- JoyMama in particular was simply delighted with the Messiah singalong at church on Sunday! (Rose, in contrast, left the sanctuary at the first chorus, claiming that the singing and instruments were painfully loud.)

We have our own songs going on this season too.

I've written before about Joy's bedtime routine, that involves filling in the blanks for Rock-A-Bye Joy and Twinkle, Twinkle, with Joy filling in the words. In recent weeks, these songs have gone to a whole new level. They've become an interactive people-play, where Joy decides what will be rocked or twinkled and when it will happen.

It looks something like this: she'll bring me her stuffed penguin and cuddle up to me with penguin in her arms. Then she'll rock slightly back and forth, saying something like "WOH-woh." Which is my cue to sing:

Rock-a-bye PENGUIN, on the tree top,
When the wind blows...

... and Joy fills in some "peh-peh" word so I can continue

PENGUIN will rock!

The funnier the item, the better the Joy-giggles. One of my favorites has been the plastic tomato slice:

Twinkle, twinkle, little TOMATO!!

But wait, there's more! JoyDad and Joy then added a variation where Joy points to her own body-parts, with a one-finger point even, to direct him into verses such as:

Rock-a-bye KNEE, on the tree top,
When the wind blows, BELLY-BUTTON will rock!

The most recent variation has to do with a home-made board book dating back to Joy's days in daycare and early-childhood ed. The book has photos of people close to Joy, plus useful shots representing daycare, home, mealtime booster-chair, potty, etc. When Joy brings this book with a cuddle and a "WOH-woh," and starts flipping to the desired pages, we get something like:

Rock-a-bye GRANDMA, on the tree top,
When the wind blows, POTTY will rock!

I've got a few more musical offerings to share before Christmas rolls around next week. Meanwhile, though, I'm off to the Solidarity Sing-Along at the Capitol, something I've written about here and elsewhere. Today's singalong of holiday-themed protest songs will end up being a test of a set of new restrictive rules designed to quash protest, this regular protest in particular. Might be something of a showdown today, though it sounds as if the administration isn't going to try any mass arrests. I'm all dressed up respectable-like just on the off chance, though!

Keep singing, and I'll report more Joy-family song-related goodies in days to come...

Inchstones

I got introduced to a new word the other day over at Special Needs Disability Parenting: BLOOM. The author was reflecting on how daunting the typical "milestones" can seem, when they feel so few and far between for our kiddos (and typically-developing kids are just galloping along.) She spoke of giving due celebration instead to the advances that would to others seem small. The baby-steps, the inchstones.

We've had some very nice inchstones with Joy lately.

Schoolwork is paying off! It's rather a new phenomenon for Joy to suddenly show us something that we haven't been working on at home and weren't particularly tracking with from school. Recent example: Joy has been excited to play catch at home lately, with a soft inflated kick-ball-size ball. All of a sudden, we started seeing her do occasional two-handed throws over her head, something we'd not taught her. "Oh, we learn that in gym!" cried Rose. And sure enough, Joy had been working on it both in gym and with her one-on-one staffers.

Another was when we went to the library earlier this week and encountered a chunky wooden bead-stringing set that went with Eric Carle's classic book The Very Hungry Caterpillar. There was a wooden butterfly attached to the far end of the string, and the "needle" was the caterpillar, and all the foods that the caterpillar ate were the beads to string. Joy knew exactly what to do, even though the "needle" was a long rectangle and had to be inserted just-so, and we hadn't done beads at home for a quite a while. But she's got a bead-stringing task-box at school!

Another delightful set of inchstones stareted with the Christmas tree and stockings and cards that she left unmolested this year. Right behind her dining chair, those cards are. Easy reach, and stimmy-favorite material. And yet she hasn't pulled down a single one.


The tree as well, she only made a very few grabs for it this year, even though she was easily tall enough to take it down with one good pull had she chosen to do so.


Emboldened by our success with the tree, I tried something new when we took the tree down. I replaced it with a plant that's been exiled to the back bedroom (now Rose's room) for years. I can't even remember when we pulled the last plant out of our common living area for Joy-proofing purposes. Long, long since.


The plant has now stood in place of the tree for a week and a half. We had to warn Joy away a couple of times, but she has mostly let it be.

This plant is a survivor, and not just of Joy-depredations. We rescued it from JoyDad's mother's condo after her passing in 1998. A number of weeks had gone by between the funeral and the final housecleaning, and the soil in the plant's little six-inch pot was bone-dry. We didn't really expect the plant to survive even the trip home from Chicago, let alone the long run.

Not only is it still going strong, it's some inches taller than Joy now.

We reckon that Grandma P would approve, and is somehow celebrating the inchstones right along with us.

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!)

Rest Ye Merry

God rest ye merry, bloggy-friends!
Let nothing you dismay!

It's Christmas morning. The stockings are filled, the presents are piled at the base of the stereo cabinet (atop which sits the little artificial tree), the Pillsbury cinnamon rolls are in the refrigerator waiting to be baked.

And I'm visiting the computer before the girls wake up.

On this day of celebrating the gift and wonder of Emmanuel, God-With-Us, I wanted to share the banners that have hung at the front of the sanctuary at our church during Advent. Had I been very organized, I'd've taken a photo last Sunday -- but there was an image of at least one of them online and that will do.


At the top of each banner appear the words "God Spoken Here." The individual banners then variously declare:

Peace Born Here
Hope Prayed Here
Love Sung Here
Joy Shared Here
These past weeks the banners have struck me as a lovely declaration of how a congregation makes a fitting place to celebrate Advent and the birth of Christ.

I can only claim bits and pieces of it for Elvis Sightings, in fits and starts. It wouldn't be a bad sequence to keep in mind for blogging into the New Year, though.

And there's one of the banners -- Joy Shared Here -- that's pretty much the guiding principle!

May this season of celebration hold good measure of peace, hope, love, and joy for all.

Oh, tidings of comfort and joy,
comfort and joy,
oh, tidings of comfort and Joy!

Mall Santa

The other night we took advantage of a no-longer-so-unusual luxury -- an evening with no special plans. We decided to go to a local mall and see a display of gingerbread houses. As we bundled up, I remembered that this mall had advertised a take-your-own-photos Santa, so I slipped a camera into my purse, even though a Santa sitting would be a major departure for both girls. (See Here Comes Santa Claus from December 2008 for the backstory on why.)

I think that Joy maybe actually looked at the gingerbread creations this year, a new development. She was more interested, however, in peering into the shops and looking up for ceiling fans. Each time she found one, she made sure to tell us: fan! OK, actually she kind of leaves off the "n"... but did you catch that? She actually told us!

We spent quite a few minutes hunkered down in front of one particular store window, where there were two mechanical toys. One was a skating rink where little figurines circled the ice in pre-ordained patterns; the other was a sledding hill on which the same two sleds appeared again and again and again. Though we've never owned any such thing, these toys were like old friends -- they appear on the Baby Bach Baby Einstein video, one of the first Baby Einsteins we acquired when Rose was a wee thing! Long, long we sat and watched, with occasional glances up at the store ceiling, where spun (oh bliss, oh Joy!) a ceiling fan.


The Santa-sitting mishaps of Rose's early years in the aforementioned post happened at this very mall as well, but all these years later they now have a different Santa and a different setup. He was sitting out in the open, next to a 20-foot-high gingerbread house, all twinkly and smiling with a small bench at his knee where children could pose rather than actually having to climb into his lap. Not a soul in line, we could walk right up to him! Rose put on a mild pre-teen-ish protest, too old for all this, but to my surprise she then actually sat on the little bench and pasted on a smile for the photo, earning herself a little candy cane and coloring book.

Then it was Joy's turn, the girl with whom we had never even attempted a Santa visit. The girl who has two new relevant words that she didn't have before -- "Picture," at which she will sometimes actually mug for the camera, and "Santa" which is very familiar from the Baby Santa Baby Einstein video (and also sounds like "panda" which is one of the funniest words in the world.)

So we said "Santa" and she sat on the bench! We said "picture" and she looked at the camera! And she smiled!

And just as JoyDad was taking the shot, she opened her mouth wide and lifted one finger to point out where she'd lost a tooth earlier that day.

Her middle finger.

I guess there's always next year. Ho, ho, ho!

Monkey Business

According to the Chinese Zodiac, I was born in the Year of the Monkey, just two days into the New Year! If you check your placement at your local Chinese restaurant, you'll likely find that people born in the Year of the Monkey are clever, skillful, inventive. One site I checked called us "the erratic geniuses of the cycle."

Guess who else in the family was born in the Year of the Monkey? Yes, that would be our Joy.

Miss Joy has seemed to have a special monkey-affinity for quite some time. It was no accident that her daycare-lady Lynda chose a monkey as the animal-icon to illustrate the name-label for Joy that hangs in the daycare entry-way!

I've already mentioned (several times) one manifestation of the association, which is Joy's adorable monkey-backpack. While it admittedly leaves one open to "monkey on her back?" jokes, and perhaps the occasionally ignorant snipe about "you put her on a LEASH? She's not a DOG!"... on the whole, people have been more likely to comment about what a smart and cute idea it is. It's actually been a while since we've used the monkey-pack at home, opting instead for walking hand-in-hand. But Lynda is only a super-hero, not an octopus, and doesn't have enough hands for every child when the daycare group walks to the park. So Joy gets her monkey-pack, with the tail clipped to another child's stroller, and everyone gets their safe and happy walk.

Besides the backpack and Joy's wiry monkey-strength and climbing ability, she has also long enjoyed monkey sounds: oo-oo-oo-AAAH-ah-ah! Her favorite animal on the Fisher Price Zoo toy, pictured below, is the monkey, whom you can just see peeking out of the yellow enclosure to the right of the tree trunk. When you push the purple lever at the right of the toy, the monkey "boings" up the pole to the bunch of bananas and makes its monkey noise. Which makes her giggle up a storm if she's in the right mood.


Lately she's been very "into" the classic monkey rhyme:

Five little monkeys jumpin' on the bed,
One fell off and bumped her head!
Mama called the doctor and the doctor said,
"No more monkeys jumping on the bed!"

Her favorite line is "bumped her head!" She'll knock on her own head three times with a great big grin, especially if you pause and wait for her. In fact, she was even using the knock-on-the-head thing as a sign that she wanted the monkeys rhyme! I haven't seen it for a little while, though. Lately she's been more likely to lead me to the mantel where we've got the boardbook:


Though she prefers to stim on books rather than to read them, this is one book that she will actually let us help her go through a page at a time and actually do the rhyme.

When Christmas-present time came around this year, we let people know that Joy had this monkey thing going on. Which resulted in this adorable new friend:


... and this wonderful toy...


Joy loves to crank the box until the monkey pops out! It's a little tricky to get him back in, but she does let us help her do it hand-over-hand.

There was yet one more monkey at Christmas time, a full-size sock monkey that looked just like the one in the jack-in-the-box. When we checked labels, we found that it came from the same company as the jack-in-the-box... but the gifts came entirely uncoordinated, from different sides of the family.

OK, enough monkeying around. Off to do some LEND homework!

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.

Christmas in July

I recently read a very cool article in the latest issue of the Autism Advocate from the Autism Society of America: Santa-America and Autism Society Launch Affiliation.

Santa-America is a volunteer organization with a special mission:

Over 100 Santas from 44 states and six foreign countries visit children and families in crisis. Santa Claus visits when a child or family needs him—12 months a year—bringing love, hope and joy to special-needs children in a loving one-hour visit at home, hospital or hospice. Santa's visits are free; there is no charge for a visit from Santa Claus—ever.

The new partnership with the ASA started out with an event in Kansas City this past Christmas:

The settings were scheduled with 3-5 families during a 30-minute period. Children waiting to see Santa were able to watch a Christmas video or play in the play area of the club house. When it was their turn, each family was taken into a private room next to a cozy fireplace to meet and talk with Santa. Santa’s “book of good boys and girls” included a page for each child, listing their birthdays, friends, teachers and what they had said they wanted for Christmas. Most important, families knew that everyone there would be accepting of any behavioral differences their children might have.

Well, that just 'bout brings tears to my eyes! What a spectacular accommodation for families who want to share the magic of Santa with their spectrum kiddos, highly personalized and without the mall meltdown triggers.

Ernest Berger, president of Santa-America, summed it up neatly:

All our love is focused on giving our children an inclusive and joyful experience.

That sounds... like some amazing bloggy parents I know.

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.

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!

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.


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!

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:


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:


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:


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!

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?


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.


(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...


(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!


(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

Photo Wednesday: Boundaries

Awwwww!!

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.)


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:


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!