Wednesday, December 29, 2010

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:

The stockings were hung...
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?)

Joy Shirt & Toys
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
Rose Pin Art Surprise
The Grin
Rose Pin Art Smile

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

JoyMama Pin Art
(I kid, I kid!)

Saturday, December 25, 2010

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.

Peace Born Here
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!

Monday, December 20, 2010

Glancing Back

Two back-glances today!

First up is a linky-list called Blog Gems: Air Your Archives that runs every two weeks over at The King and Eye.

The current airing-of-the-archives asks: "Point us all in the direction of your first public post"!

Join in the Blog Gems airing of the first public posts (as I did! fun game!) or visit mine directly, all the way back to July 2008.

The other glance back is just a week, to my Dec. 14 post wondering why one doesn't hear the phrase "Some of my best friends have autism!"

I just picked up a fascinating new insight from a comment to a post called "She's had classes in autism, people. Don't offer any suggestions." over at A life less ordinary. The original incident that's being discussed is a little convoluted -- you can go read about it there if you like. More interesting to me was the first comment on the post. The comment suggests that in the case of autism, the formulation of the "Some of my best friends" line goes more like "I've worked with people with autism" (or, as in the original incident, "I've had classes in autism.") The claim is a little different, but the use is similar: it can be used as cover for whatever unfortunate or offensive stance about autism one might stake out.

I didn't mention it in the earlier post, but I'm still sort of chewing over the thought of whether/how the claim of such an association can be used for good (as opposed to being used as cover for an opinion you know will mark you as insensitive/bigoted/whatever). It occurs to me that I stake out my bona fides as the parent of a child with autism all the time. But then again, I don't think I've ever used it to say, "I've got nothing to learn from you," or "Don't get me wrong, I'm not prejudiced against people with disabilities / autism."

Still cogitating!

Sunday, December 19, 2010

Eggy Bake

It's an unusual weekend around here. JoyDad is off in North Carolina, celebrating the newly-minted PhD earned by his sister, Auntie Running-at-the-Mouth. We're all mighty proud of her! but Joy and Rose and I get to be proud from a distance.

Rose especially is missing her daddy, so I've tried to add some extra fun to the weekend. One of the fun things we did Friday night was to make an unusual meal, a meal beloved by the female contingent of our little household, but of which JoyDad isn't a great fan (and especially not for dinner): Eggy Bake.

Eggy Bake is a dish I learned way back in high school at a service-week I did with some other volunteers in Ontario one summer. Very simple, all the ingredients are household staples, and you serve it hot with maple syrup. The name I learned it by is Aggkaka, a Scandinavian title and treat -- but the name just sounds so gutteral and scatological, I just couldn't bring myself to call it that with the kiddos.

However, Rose was on the ball. "Is it really called Eggy Bake?" she asked while devouring her portion, having glanced at my recipe and noticed another title. "No," I fessed up, "the real name is Aggkaka. But I call it Eggy Bake because 'Aggkaka' doesn't sound so great."

"Aggkaka? Why doesn't that sound great?" she persisted.

Oh sh..., I mean, crap, that is, caca! I wasn't planning this vocabulary lesson!

"Well honey, in some languages 'kaka' with a K means 'cake,' like in Swedish I think. But in other languages like Spanish, 'caca' with a C means... poop."

Her eyes opened a little wider. "Oh," she said, "I think I'll keep calling it Eggy Bake too, then."

Down at the other end of the table, her younger sister was inhaling her own serving with delight (and independently with her fork!) Between bites, we suddenly heard Joy's comment on the situation:



Here's my Aggkaka / Eggy Bake recipe, exactly the same as I found it on this website when I went scouting around to confirm that people really do call it "Aggkaka":

2 T. butter
3 eggs
2 c. milk
1 c. flour
2 T. sugar
1 t. salt

Melt 2 T. butter in a 9x9 baking dish at 425 degrees. For batter, beat the rest of the ingredients together. Pour batter into the hot butter. Bake 20-30 minutes or until set and golden brown. It will fall when you take it out -- don't worry!

Serve warm with syrup. Serves 4 (but 3 hungry JoyFamily ladies can polish it off no problem).

Friday, December 17, 2010

Product Hits & Misses: "Just Like the Other Kids" Edition

In general, as a parent, I tend to look askance at the argument "But Mo-o-o-o-m! All the other kids have one!" My poor, deprived children have neither Nintendo DS nor Playstation nor X-Box nor even Wii. Rose will tell you that on such scores, particularly with the expensive stuff, Mama has a cold Grinchy heart.

And yet. As with so many things, Joy leads me to new perspectives. For Joy, the opportunities to be like other kids are fewer and farther between than for her sister. I find myself actively seeking out opportunities to emphasize the "just like the other kids" aspects of her life. In some cases, like the two below, that includes products -- products that don't break the bank, even!

When we sent Joy off to school this fall, eating and drinking were a special consideration. I can pretty easily send a bag lunch that will keep her well-nourished. Drink, however, was a bit of a question. Joy doesn't "do" milk or juiceboxes these days. Fortunately she still likes water (and soda, though we don't send that to school!) She gets an open cup with supervision at meals at home, and was still using sippy-ish cups at daycare.

But Mama can't send a toddler-ish sippy to kindergarten with her big girl! So I went looking for a spillproof cup that:
  • fits in a lunch box
  • holds a decent-size drink of water
  • doesn't leak
  • is easy to open and close
  • is easy to drink from
  • is not particularly susceptible to chewing damage (no soft-straws)
  • has gradeschool appeal

I found it at Target, at the appealing price of $3.99!

Target Embark Water Bottle
Target's Embark water bottle is BPA free, comes in bright colors (but without commercial character images), and has held up for a number of months so far. Joy has a pink one, Rose has a purple one, both are happy with them. We know of at least one friend whose mom got her one too after seeing my girls using theirs at the park after school! The only downside of these I can see is that they're in-stores only. Which is where Santa went to buy some stocking stuffers lately -- it will be good for each girl to have a back-up bottle...

Well, we got the original bottles back in the summer when the weather was still hot and the hydration need was more evident. But now we've got 10 inches of snow on the ground and temperatures in the deep freeze. Growing girls need winter gear, and that includes snow boots. Fortunately Joy does not have any particular foot issues / need for orthotics or any such. What I do require in Joy-boots is rugged construction and ease in getting the things on and off. What we've used over the past several years for both Rose and Joy, just like many of their classmates use, is the Snow Flurry boot from Land's End:

Snow Flurry Boot
The big draw of these boots ($29.50, and you can order them online) is the velcro side-closures. You can't entirely tell from the picture, but each of the sides pulls open into a big wide gusset that makes lots of room for a little foot to go in, and then clings tightly closed to keep the boot on.

They've been improving these boots since we first tried them a few years ago. My only complaint with last year's pairs was that they got pretty stinky after a long season. This year's version claims "Antimicrobial finish helps fight odor" so we'll see if it helps! They've also made last year's little pull-tabs at the top of the closure into actual loops that a little finger can fit through to pull.

Joy's got the purple ones, and a couple of days ago as we were walking home we fell in with one of her classmates, a little guy who always greets her with a "hi, Joy!" even though he usually doesn't pay much attention to her other than that. This time, however, he noticed and took care to point out that Joy had the exact same boots as his younger sister -- and the same style as his own. Just like the other kids.... ahhhhh.

I've been lax about "disclaimer-ing" these product posts, but I do want to make clear -- I receive no compensation nor consideration from the companies whose products I write about. If I ever get a review sample of anything, I will disclose that fact and would point out both positive and negative features forthrightly.

Tuesday, December 14, 2010

Some of My Best Friends...

It's interesting, but sometimes claiming friends can be the cherry on top of a big credibility-loss sundae.

Consider the statement that starts "Some of my best friends are..." and ends with the naming of a minority group, generally a minority group which the speaker has just been disrespecting. It's such a cliche that I'm amazed anyone tries to defend themselves anymore with a "some of my best friends are" statement -- but it happens, and publicly too.

One example from the news lately would be John Cook of the State Republican Executive Committee of Texas. He's been leading a charge to replace the Texas state Speaker of the House, Joe Straus -- who is Jewish -- with someone with "Christian conservative" values.

But I'm not a bigot, Cook told a reporter for the Texas Observer.
"They're some of my best friends," he said of Jews, naming two friends of his. "I'm not bigoted at all; I'm not racist."

Uh-huh. No bigotry to see here, folks, let's move on.

I'm also reminded of an incident at a local business a while back, where I got into a casual conversation with the proprietor about the history of the area since the (long ago) founding of his shop. I didn't see it coming, but his reminiscences turned suddenly ugly as he began ranting against the folks he blamed for causing all the problems in our neighborhoods and school system: those gang-banging black low-lifes who'd come up from Chicago to take advantage of our fair city's generosity. As he saw me scrape my jaw off the floor and start to frame a rebuttal, he quickly interrupted himself, "But don't get me wrong, now. Some of my best friends are black!"

Uh-huh. Sure. I'm quite positive I haven't gotten you wrong.

So why am I writing about this on Elvis Sightings?

Because it occurs to me -- I don't think I've ever heard anyone say:

Now, don't get me wrong, some of my best friends are autistic...
I'm no bigot -- some of my best friends are disabled!

Try plugging those "some of my best friend" phrases into Google. Nada, unlike if you plug in Muslim, black, gay, Hispanic, Jewish, Mormon.

Why is that? It isn't as if people don't blame people with disabilities for certain societal ills -- like, for example, supposedly sponging up a disproportionate share of tax-supported resources. Or for "burdening" businesses with onerous accessibility regulations.

Is it that disability isn't a front-page, hot-button issue on the national scene right now? Unlike, say, gay marriage, or building a Muslim cultural center in New York, or electing our first president of African descent, or immigration across our southern border.

Is it that the disability rights movement isn't on people's radar, unlike civil rights or gay rights or women's rights? (I'll freely confess to being awfully ignorant on this score before Joy came along.)

Maybe people without disabilities don't even notice the discrimination? Even -- or especially -- when they're/we're complicit in it?

Does it perhaps not even occur to some folks that having best friends with disabilities... is even possible? (Another confession: my circle of close "meat-space" friends is not nearly as diverse as it might be, and disabilities are one aspect of that lack of diversity.)

Maybe it's a combination of the above, or some other aspect that hasn't occurred to me?

What do you think?

UPDATE 12/20/10: There's a bloggy conversation going on today about a blogger who disparaged comments on her (otherwise quite compassionate) autism-related post, comments from a person with autism and a parent of a child with autism, because she'd "had classes in autism" and doesn't like receiving unsolicited advice. Check out the first comment on this post about the issue for why this may be related...


And, welcome to anyone who came over here from Elvis Sightings' new Facebook page. After all, some of my best friends are on Facebook! (Hmm, something doesn't sound quite right about that...)

Saturday, December 11, 2010

Abilify Report

These past few weeks have been a very interesting ride.

Regular readers will recall that Joy began a trend of increasing "acts of ow" starting last summer. Injury-attempts were directed both at herself and others, peers and adults -- and the number of incidents simply sky-rocketed with our rocky transition to kindergarten. Most alarming were the bites to staff and to us -- nasty painful injuries (the bites to herself were unsettling too, but her self-bites were at least somewhat less extreme). I've still got bite-marks dating back to September. But we've been concerned to keep everyone safe, Joy and her peers and staff and sister and everyone all around.

So we began to explore whether medication was a potential tool to get Joy to a better place. Lots of kids with autism are on meds, even if it's maybe not talked about as much as other interventions! As things go, we managed to move relatively quickly -- got a psych referral from Joy's primary care doctor toward the end of September, took Joy to the psychiatrist mid-October and wound up with a recommendation to try Abilify, considered and blogged my reflections on Abilify and e-mailed the psychiatrist with questions, had him get Joy's neurologist to sign off, got a pre-authorization for our insurance to cover the medication -- and started at a 1mg ramp-up dose, half the smallest pill, on the evening of November 8. We were to go up to 2mg in 5 days; the clinical trials had gone up to 10mg and 15mg doses.

The decision to start Abilify was one that we actually ended up having to re-decide several times. The thing was, after the psychiatrist appointment, the outwardly-directed "ows" had begun to fade away, and the self-directed "ows" had dropped too. As the numbers declined, the question repeatedly arose: do we still need to do this? and the discussion continued.

JoyDad and I had different impulses in this could-go-either-way debate. It's a tricky thing when parents disagree about treatment. (See a recent excellent essay by Lynn on The Thinking Person's Guide to Autism blog. JoyDad and I are fortunate to be on the same page much more often than not.) In the end, we decided that since the injurious stuff was still happening, though at the lower level, we'd go ahead with what felt like the more pro-active approach.

The very next day at school after she took that first half-pill, Joy had a noticeably rougher day. And the next, and the next. The self-directed "ow" numbers shot back up, she was unhappy, she was drowsy, she took unusual naps, she got constipated, she was hungry and more intense around food issues. When things were still problematic several days later, we got permission to not bump up the dose. When things were still problematic a few days after that, we began to ask, "How long do we need to go to give this a fair trial?" The psychiatrist advised us to try switching the dose to the morning, which seemed to help with the tiredness but didn't change much of anything else. Our follow-up psychiatrist appointment came around on December 2, at which point we sought and received dispensation to halt the Abilify. We plan to make another stab at the drug-free approach (well, OK, she's still on powerful anti-epileptics), and so far Joy does seem to be in a better mood and the "ow" numbers have dropped somewhat.

The weeks on Abilify were frustrating, but not really crisis-feeling. The incident-data patterns were more spiky than consistent, with a couple of pretty darn good days among the rougher ones -- and our (data-free) Thanksgiving trip went better than expected. Still, why push ahead with a drug when it's not clearly helping, seems to be making things worse, and is definitely side-effecting?

The incident data after the quit-point hasn't been spectacular, but it's at least somewhat better. Things feel noticeably better to us though. Last Saturday morning we had the best weekly grocery-shopping trip in recent memory. The therapy-sessions since then have been unusually good. The mood in general has been improved. And the side-effects have faded.

Though Abilify didn't do what we hoped it would, I'm glad we tried it. If we had chosen otherwise, we'd still be in the position of making the to-start-or-not-to-start decision over and over again, every time things started getting rougher.

I'd mentioned in the previous Abilify post that the hair-pulling self-injury was getting worse to the point that Joy's hair was getting thin again. It's been a different situation than when we last encountered hair-pulling, a year and a half ago. Last time was all about the stimmy; this time, it's overwhelmingly about the frustration. I was beginning to worry that we might need to go the buzz-cut route once more, which would feel like an even bigger deal now that she's in school. Before going that far, however, I pulled out the trusty shears on Sunday and inflicted a boyishly-short layered cut, the most ambitious I've ever tried. I think that practice is making progress for my untutored beautician techniques:

Joy's latest haircut
(updated) Photo credit: Rose

And, guess who else is making progress. Here's the latest week's worth of self-hairpull counts from school, starting Thursday 12/2:
28, 22, [haircut here], 8, 5, 0, 2, 6

Wednesday, December 8, 2010

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!

Monday, December 6, 2010

First Snow

We got about four inches of lovely fluffy snow on Friday night into Saturday, the first snow of the season! What a perfect first snow -- waking up to it on a weekend rather than having to go to school, enough for sledding but not so much that sleds would get stuck, warm enough to play but not enough to melt the stuff before you get your fun in.

Rose and Joy both adore the snow, but in very different ways.

Rose on her Snowboard
Rose looks at the snow and makes a plan -- and she's old enough that she can carry out those plans herself when they're on our property! She gets herself all dressed and then goes forth and shovels, makes snow angels, and sleds or snowboards down the gentle incline in our backyard. Alas, we had mistreated the snowboard over the summer, such that it had warped in our garage under the weight of hoses and a bicycle(!) She still managed to make it work for now, though, even when we took a family jaunt to the fairly-steep hill at their elementary school.

Joy, on the other hand, inhabits the snow.

Joy Breaks a Trail in the Snow
It takes quite a bit of adult interference to get Joy bundled up appropriately -- but once you let her out the door, she's off with a bound. Snow is an amazing stimmy! It's everywhere, and (unlike dirt or woodchips), it can actually be OK to throw it in the air! She blazes trails through it (the above pic is at the school grounds), she rolls in it, she trickles it from her mittened hands, she makes her best attempts to consume it -- if she can get her face into it before a JoyParent can get to her....

At the schoolyard, she was thrilled to go speeding down the long hill on a sled with mama, but then not much interested at all in working on getting back up the hill. I eventually towed her back up in the sled, a long slow process because she kept dragging her mittens in the snow and I kept stopping to request that she get her hands back into the sled. At least she stays in the sled, which wasn't the case as recently as two years ago! And she was happy to announce "Go!" to get me to start pulling again -- over and over and over.

Alas, this week the temperature is going into the deepfreeze. The snow play bouts will be shorter and chillier, I'm thinking. But we'll do our best to enjoy it while it's still got the novelty factor!

Saturday, December 4, 2010

Sibling Stories

Joy's big sister Rose (in 3rd grade, age almost-nine) was assigned this past week to write a poem. Unprompted, she chose her sister Joy as the subject of the poem. She neither asked for nor received any suggestions other than confirming how to spell some of the longer words.

I wish I could blog the whole poem here, but I can't do that without blowing the pseudonyms. Joy's full real name is part of the poem, and I can't remove/replace it without making it something considerably other than what Rose wrote. But I can tell you that she described her sister using the words "intelligent" and "really impressive" and "magnificent."

I don't know if it's actual perception or wishful thinking, and I don't really care. It captures something of the eyes through which Rose views her sister -- eyes that simply shine with love.

I have to think of two sibling stories I've encountered recently, from generations not so long past, that started in circumstances very different from ours.

One story is a minor strand in the amazing book The Immortal Life of Henrietta Lacks, by science journalist Rebecca Skloot, which I read earlier this fall. (Here's a fine review of the book.) Henrietta Lacks was a young woman in Maryland whose cancer cells, taken without her knowledge or consent shortly before her death of the disease in 1951, led to a huge list of scientific advances and a multi-billion-dollar industry in cell culture -- at no financial benefit whatsoever to the Lacks family. One small part of the difficult history of the Lacks family: Henrietta's oldest daughter Elsie had epilepsy and substantial developmental delays, and was placed in a mental health institution, where she died two years after her mother's passing. Or perhaps I should say, an overcrowded hell-hole of an institution called the Hospital for the Negro Insane of Maryland, where she was almost surely subjected to brutal experiments -- a practice more common in those days than we'd like to think. Elsie's youngest sister Deborah had no idea about all of this (either her mother's story or her sister's) until Rebecca Skloot started unearthing the history, and then Deborah joined Rebecca on the quest to find out about her sister, and so much more. It was only this past May that Elsie Lacks' remains were relocated to the family plot and honored with a proper headstone -- little enough that anyone could do in her memory after all she most likely suffered.

Another is a story that the JoyFamily happened to catch just this past Sunday on CBS Sunday Morning. This one was the sibling-story of Jeff Daly, whose little sister Molly was sent away in 1957 to an institution (one that passed for "enlightened" at the time) due to her developmental disabilities. "Where's Molly?" he'd ask his parents, and they'd tell him "Molly's not here any more." Eventually he stopped asking, and the memories receded until his parents' deaths in 2004. He found Molly's Social Security card in his father's wallet, enabling him to begin a search for his sister -- who turned out to be still alive and residing in a nearby group home. They are now part of one another's lives once more, feeling very blessed to be able to be family again.

Rose was watching this with us, and struggled to take it in... that families used to be advised to send their Joy-children away and be told not to visit them, that everyone would be better off if you'd just forget about them. (Oh yes, she made the connection immediately). She couldn't imagine Joy living anywhere else, when Joy so very clearly belongs with us!

I found out even more of the story when I started poking around online -- there was a Reader's Digest article in March 2006 that gave some details that I'm glad Rose didn't hear. That Molly disappeared suddenly, when Jeff was six: one meal she was at the table, and the next she wasn't. That he used to get sent to his room for asking what happened to her. That their mother only ever visited Molly once and seemed to have been relieved to send her away because, as Jeff was told when he started interviewing relatives to make a movie of the story, "a disabled child wasn't right for her perfect life." That Jeff and his wife Cindy, even in the mid-2000s, had to fight to change laws that were preventing other families in their situation from finding relatives who had disappeared into institutions like Molly had.

I'm so grateful that we live when we do, and where we do. That the Joys of this country have a legal right to a public education. That we have not personally encountered a single soul, doctor or educator or family or acquaintance, who has suggested that Joy would really be better off living somewhere else without our interference (of course such attitudes do exist, it's not hard at all to find them online! but nobody in our immediate circle has even hinted at it. Which is good.)

We still have a long way to go. Warehousing happens. Abuse happens. Much is still wrong. But we've come so far, so very far! And sisters like Rose and the "really impressive" Joy, and their families and communities, are so very much the richer for it.

Thursday, December 2, 2010

Blog Hop! New Accomplishment Edition

OK, I'm going to try something new here, that I've seen several of my new bloggy friends doing. It's a special needs blog hop! Today's theme: New Accomplishment For Your Child. (Though if this works, it's a new accomplishment for me too, so double the blog-hoppy goodness I would say.)


Joy has picked up an adorable new skill recently.

I learned about it the other day when I let loose a tremendous sneeze.

Joy came bounding over, saying "BEH boo! BEH boo!"

Bless you too, kiddo!

Ah, but there's more. Next time I caught her in a sneeze, and told her "Bless you!" -- she responded, "GEH goo!"

Any guesses as to what that one was?

Wednesday, December 1, 2010

Included: Rewards at School

At the beginning of the school year, before the craptacular spectacular transition issues, we'd discussed with Joy's teacher his system for rewarding good behavior. Each child has a star-chart, and during the course of the day he publicly awards stars when he "catches" a child behaving well. The charts live in the children's lockers, and when they fill a chart, they get to go "shopping" at the special reward-shelves for a book to take home.

We'd originally contributed some board books (more expensive than the usual paperback rewards) for Joy to take part in the system. But then with Joy not in the classroom much at all, and having the reward so far removed from the good behavior, on top of the rough way she treats books... she ended up getting more immediate small rewards instead, and just not participating in the classroom's system for the first weeks.

Until I was volunteering in the classroom one Monday. One dear little girl went out of her way to tell me that Joy was doing well (bless her heart!) But a young fellow at the same table wanted to make sure that the record was set straight -- or maybe he just liked "telling"? Anyway, he swiftly pointed out that maybe it wasn't so great after all, because Joy never got to go book-shopping.

So I took this perspective to Joy's team -- that, even if the reward system is not perfectly set up to be meaningful to Joy, the other kids are noticing and her participation (or lack thereof) has meaning to her classmates. They immediately agreed to make a change. Now Joy gets stars like the other kids, no matter what level of meaning they may or may not have for her. And if she's not in the room much that day, her aides make a point of coming to the teacher and announcing audibly that Joy should get stars for thus-and-such she's done OUT of the room.

The first full star-chart that came home with a board book brought tears to my eyes. Her teacher had signed it with the message, "I'm so proud of you!"