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!"

Sunday, November 28, 2010


So much to be thankful for, this Thanksgiving weekend!
  • For good health and good weather, that enabled us to take our planned crazy Thankgiving road trip to Chicagoland and on to Indiana.

  • For smooth traffic and open-road tolling, reducing the drive-time immensely -- we have plenty of past years' memories of waiting in long idling lines for our turn to throw coins into tollboth baskets.

  • For Rose's help with the pie-baking on Thursday morning, as we step through our crazy routine -- there's that insanity bit again! -- of trying to bake two kinds of pies plus pack on the morning of Thanksgiving Day itself. The pecan pie (complete with caramel candy and rum) was about the best ever.

  • For AuntieS and her labors of love in preparing her home for company, and preparing the rest of the feast, and sticking with it even through a lot of little "oopses" in the process. It was all delicious, and we'd never have guessed at the trials and tribulations!

  • For AuntieS again and her thoughtful purchase of little Thanksgiving gift-lets for the girls. For Joy, she chose a non-traditional present of two little bundles of curly-ribbons from the gift-wrap aisle. Perfect, perfect, perfect! For Rose, a Barrel of Monkeys, with which she played as if it were a brand-new invention.

  • For Joy's delight in tossing the curly ribbons back and forth in a "my-turn, your-turn" game with AuntieS's mother-in-law -- with whom Joy has never actually played before.

  • For my amazing 101-year-old grandmother, whom we helped to move into assisted living quarters last Thanksgiving. Not that she felt quite ready for the move at age 100, mind you. Her new apartment is bright and comfortable, and she's among the least "assisted" of the residents there. She took us on a tour of the building, she played cards and dominoes with Rose, she and I compared reading lists, she took us out to dinner!

  • For the family of Joy's playdate pal J-Cat, who loaned us a portable DVD player for the trip, making Baby Einstein possible at Great-Grandma's and in the car.

  • For the swimming pool at the hotel, so the girls could work off some of their energy while JoyDad (who did ALL the driving) and Great-Grandma could take an afternoon break.

  • For zero "acts of ow" between Joy and Rose for the entire trip cooped up in the car -- right up until a hair-pull when we had arrived back home in our own driveway and I wasn't getting Joy out of the car quickly enough to suit.

  • For Joy's success in putting a few carefully-chosen ornaments onto our little artificial Christmas tree, and for Rose's delight in decorating the rest of it.

  • For seventeen years of marriage between JoyMama and JoyDad, as of yesterday. Here's to the next seventeen!

Wednesday, November 24, 2010

Product Hits & Misses: Big Girl Bed Edition

Monday night marked an important milestone in our family.

It was the first time EVER that all of us slept on adult-size beds!

Ever since Joy first climbed out of her crib, long time since, we've been using one form of tent or another to keep her safe during night-times and rest-times. She doesn't protest the enclosure at all -- I think it makes her feel safe too -- but if it's not there, she's up and about in a flash. Won't stay still long enough to have any chance at sleep, and her bedroom is not currently safe to be up-and-about in the middle of the night. (We're having some modifications done. But still.)

I wrote about tented products in my very first Product Hits and Misses post two years ago. Crib tent from Tots-in-Mind was a huge hit, making the crib usable all the way up to age 6 and a half! Pack-n-play tent was helpful but fiddly, making overnight travel possible but it always took such a long time to set up, plus it's definitely got a size limit to it. The PeaPod Plus travel bed, which took the place of the Pack-n-Play tent, was an astonishingly fine find. Good up to age 6 depending on kid-size, this portable tent sets up in one springy motion (though you do have to pump up the little air mattress to insert in the base separately). It folds away with nearly equal ease. We've used this for both travel and out-of-home napping for two years, at daycare and now at kindergarten. Amazing product.

Less amazing was the Pacific Play Tents Secret Castle Twin Bed Tent. This product fit over a twin mattress, and we'd hoped that it might serve a containment purpose for Joy with a few modifications (for example, the front door zipper only went top-to-bottom, but the base of the door was open, so I tried to modify that with snaps.) Not only could Joy get out easily, but the tent was poorly ventilated and also wasn't well-set-up for bedding. Big miss, alas.

Well, since we did that product search two years ago, a new invention has come on the scene. May I present: the Nickel Bed Tent from Ready, Set, Bloom LLC.

Nickel Bed Tent from Ready, Set, Bloom
This parent-invented product came about due to the needs of a youngster with autism (named Nick, hence the Nickel Bed.) It's sized for a twin mattress like the play tent I just mentioned, but unlike the play tent, with the Nickel Bed you insert the mattress INTO the tent, so you can put a full set of bedding on it. The tent has great ventilation, and zippers open on three sides: two long sides plus one end. It also comes with little carabiners for hooking the zippers together, assuming you don't want them to be unzipped from the inside.

Joy loves her new tent. She popped right in with no trouble at all, snuggled the familiar blankets, went right to sleep. Two nights now, no troubles. We've started with an air mattress, but a "real" mattress is on order and with any luck will be able to pick it up today. Rose is a little bit envious, but she got to move to her own room with a queen-size platform bed some time ago, so I think she'll deal.

The tent is proving popular enough to keep selling out. It was on back-order when we discovered it, and is now on back-order again. The inventors/proprietors of Ready, Set, Bloom have been making tweaks to improve the product with each new batch from the factory, so the tent is apparently still a work in progress. The price is good: the current iteration sells for $139.99 (I think we paid $125). Compare that to a hospital-bed type enclosure!! One thing I really appreciated was being able to follow the company on Facebook, thus getting the inside scoop on product updates and shipping updates and such.

While this product is a huge hit with us, we've also found a few things that could use improvement.

The tent is, unfortunately, a bit of a challenge to set up. The tent poles have square-cut ends that don't slide particularly easily into the tent-fabric channels. The four main poles, instead of starting out straight and bending in the process (like most tent-poles these days do), are actually curved aluminum, probably more sturdy but also a little more finicky to put together and thread through. The set-up instructions seemed to refer to a previous iteration of the product, referencing straight poles of three different lengths when actually there are two matching short straight poles and then four matching curved poles -- confusing at first!

I do believe I'm spoiled by the "spring-right-out-of-the-bag" set-up of the PeaPod Plus. I could wish for a similar set-up in a large size product! though the PeaPod has an oval footprint and requires its own custom inflatable mattress, while the Nickel Bed Tent accommodates a standard twin mattress & bedding, and therefore can fit a twin-bed frame -- it has straps at the base of the tent to fasten onto a frame if you're using one. We'll likely travel with the PeaPod for a little while yet, as long as we can, due to the differential in set-up ease. When she outgrows that, we'll have the Nickel Bed Tent and air mattress, such that overnight travel will still be possible. For that awesome benefit, we can overlook a little bit of set-up time.

The fact that the zippers are made to attach together also technically makes the Nickel Bed a form of restraint. So we couldn't spend Medicare Waiver funds on it -- though if we'd needed a hospital-ish bed, we could have accessed that funding to the tune of a couple thousand. Fascinating how things work, or don't, sometimes.

All told, Joy's new Nickel Bed is a huge step forward, and I salute the inventors for seeing the need in their own lives and making their solution available to the world as well!

Monday, November 22, 2010

Was It, Or Wasn't It?

Saturday night I sat with Joy on the couch, helping her brush her teeth as per our bedtime routine. Joy was very tired, drifting toward sleep. Then all of a sudden, her legs made a swift jerking motion.

Any other kid, and my first thought would be that it was the kind of jerk-awake thing that happens as sleep threatens to overtake you. But since it's Joy -- first thought was: seizure?!?

I asked JoyDad if he'd seen that jerky motion, and what it looked like to him. No, he'd been looking the other way... but that reminded him, at snacktime earlier in the day, Joy had zoned out for a few seconds. It felt somehow beyond just lost-in-thought, really seemed "not there." And he'd briefly thought: seizure?!? but then she was back and it slipped his mind until my question.

So, was it or wasn't it?

And, if it was, what was it about?

If it was, we've got several potential culprits to consider.

One thought is that she's been growing like a weed, and it's been a long time since we upped her seizure meds (no change in dose since the seizures stopped over two years ago.)

Another thought is the whole thing about the ramifications of switching between manufacturers in the use of generic epilepsy drugs. Since I wrote about the issue in July, our drugstore has switched manufacturers on that particular medication every time we have renewed that prescription. Every single $*#&% time! And we cracked open the newest bottle from the latest manufacturer just a few days ago.

Yet a third thought is the Abilify. Yes, even though I said I wasn't going to tell you, I'm telling you now. We started a couple of weeks ago and it has not gone as we hoped, which is an whole 'nother post in and of itself. But she's still on it as of this writing. More important to today's reflections is that Abilify does have a seizure-caution in the package-insert, because one person did start having seizures during the clinical trial, which could easily have been pure chance due to the population -- or not. We did get the OK to start Abilify from Joy's pediatric neurologist, who didn't think it was likely to change her seizure threshold. But Joy has proven to be unusually sensitive to Abilify in a number of ways, even at half the dose of the smallest pill.

So maybe it was. But maybe it wasn't. We didn't see anything at all seizure-ish on Sunday.

For now, we're watching and waiting. And hoping and praying.

We'd love it if you'd join us in the hope-and-pray part.

Sunday, November 21, 2010

Included: Walking Home to a Playdate

Joy had a classmate over for a playdate last week after school. This classmate's older sib had been a kindergarten classmate of Rose's three years ago and they're still close, so it was a double-decker playdate of younger girls and older. This was the first time in several years that the younger sib had come over to really spend significant time with Joy.

We started the playdate with all of us walking home from school together, about a 15 minute affair. On my way to school, I had grabbed a couple of little twigs of pine needles for Joy as I often do, because it's a favorite stimmy of hers. This time, as Joy's classmate came running over to us instead of heading for the bus, I realized that the pine twigs could be a great tool to invite her into a bit of Joy's world for the walk home.

So I gave one twig to Joy (who grabbed it with gusto per usual) and one to her friend. I explained to the friend that Joy loves to play with pine needles, and had her try the things that Joy likes to do -- tickle herself with the soft needles, twiddle them in her fingers, crush the needles a little bit and take a sniff of the piney aroma.

Both girls carried their pine twigs the whole walk home.

Friday, November 19, 2010

Included: J-Cat's Birthday Party

In Joy's life lately, there have been lots of neat little examples and efforts toward inclusion -- thinking about ways to integrate her life and her experiences into the lives of those around her. I was contemplating a great big long post about it, but it grew too huge. So I'm going to post a bunch of examples, in bits and pieces. That way your eyes don't cross while reading, and I get a whole bunch of posts out of it instead of just one! (Ulterior motive thus confessed.)

First up -- a birthday party last month. We are so happy when Joy gets invited to birthday parties! This one was a family party, celebrating the birthday of her young suitor and playdate friend, otherwise known as J-Cat.

The hand-designed thank-you card from J-Cat to Joy

A number of things went into making this party successful for Joy. First off, it was a family party, so there were parents floating around along with kids of various ages, meaning that not all the kids had to be involved in any one activity all at once. Then there was a meal that Joy appreciated heartily -- pizza, grapes, baby carrots, and birthday cake! all things that she loves to eat.

Most importantly, J-Cat's mom had Joy-proofed the living room area and filled it with things she's liked on our playdates: an exercise ball to bounce on, scarves and ribbons and noisy toys. Other kids could come join her there, and some did for little stretches -- Rose helped take the lead with that -- but Joy could also happily play alone while adults talked nearby. She also went outside to swing on their swingset, while other kids ran around with their games.

Birthday cheer to J-Cat, and thanks to his mama! We sure enjoyed the party.

Tuesday, November 16, 2010

Product Hits and Misses: Sensory Seeker Edition

As with the autism-insurance post -- it's been a while since I've done one of these!

I'm really excited about a new goodie that has come into my sensory-seeking daughter's life lately.

I posted briefly at one point about Joy's home-concocted weighted vest. Unfortunately I never posted a photo, and now it's been disassembled and discarded, alas! But I'll re-describe it, and then tell you about the newer-and-better version.

Foy Joy, a weighted vest helps give her some of the sensory input she so seems to crave. While she's wearing it, it seems to help her get to a place of being calmer and more focused. The theory would have it that the effect should last after the vest is removed, which doesn't actually seem to be the case with Joy. (If you've seen one person with sensory issues, you've seen one person with sensory issues!) Here's a page with a little more information on weighted vests.

Commercial weighted vests can get pretty expensive, and so one of Joy's occupational therapists set her up with a homemade vest based on one of those swim vests with removeable floats. Looked kind of like a pink barrel. Take all the floaties out, replace with weights, and there you go! Add as much or little weight as you need, in consultation with your OT. Weights can be bags of rice or beans or fishing weights or shot, either plastic baggies swathed in duct tape or homemade cloth beanbags. Since they're removable, you don't have to worry if the weights can be gotten wet in the wash. We even added weight with a couple of duct-taped door-hinges!

The floaty/weighted vest worked well but had some disadvantages. First, it was obviously not a standard piece of clothing (see barrel comment above), so it sets the wearer apart and people do tend to gawp or ask questions. Second, it was made of polyester-ish material, liable to snags and runs. The weights in particular tended to poke out of their pockets eventually.

Our new improved replacement is a kiddie fly-fishing vest from L.L. Bean! We have to credit Joy's kindergarten staff for introducing us to this. Price is $34.

The vest is breatheable and durable, woven cotton instead of the snaggy knit. It looks like a real garment, and comes in khaki or pale blue or pink. It has rings on the front to clip chewies on, and one in the back for a caregiver to grab. It has a clip over the zipper in front to keep the vest on. And, it has pockets all over the front for weights, plus a big flat zippered pocket for weight in the back!

We're using the weights from the old vest. It's working out really well so far. This one's a hit.

[Update: I just remembered a post from Both Hands & a Flashlight a while back, about their adventures in homemade weighted vests, that you might want to peek at as well.]

Another hit with Joy, in general and specifically, is keys. Real keys, none of your plastic fakes, thank-you-very-much. She loves to handle them, clink them, carry them around, stim on them. Mama's ring of keys is the ultimate prize -- Mama's got to be very careful not to bring out the keys when Joy might request them and have to be told no, or great unhappiness ensues.

So, we've come up with a replacement.

These are keys from the hardware store. They're "mis-keys" -- keys that got flubbed up in the process of cutting and had to be discarded.

Different hardware stores have different policies with mis-keys. One store near here cheerfully gave us a whole handful for free. Another said sorry, but they return them to the manufacturer for some sort of refund. Yet a third tosses all their mis-keys and metal shavings into a big ol' bucket that you can dig through and choose the keys you want for twenty-five cents a pop.

The ring of keys pictured above is connected to a mega-chewelry bracelet from National Autism Resources. I'd initially bought a cheapo curly-bracelet keychain at the hardware store, but when Joy started chewing on it, the teeth marks stayed and the bracelet got deformed very quickly. The real thing is worth the extra money.

We've also recently acquired a ChewEase Clip-on Chewy Tube from National Autism Resources. The product has a plastic clip at one end, attached to a chewelry-type coil with a key-ring and a chewy-tube at the other end. Yes, I did say "key-ring." You could see how this product might work together with our keys obsession...

Just be careful to track the keys when your kiddo is carrying them about. We've lost two sets on the prairie, one because she dropped them when I wasn't looking, the other because I apparently hadn't fully joined Joy's key-ring to the ChewEase key ring and it wiggled off. I do hope that, if anybody found them, they didn't knock themselves out trying to find the poor soul who's been locked out of a non-existent home & office & car!

Tuesday, November 9, 2010

Autism Insurance and Mental Health Parity in Wisconsin

NOTE: For more information, including links to all my posts on autism insurance in Wisconsin, visit Wisconsin Autism Insurance - Updates from Elvis Sightings

I recently had a visitor to this site who arrived via the following Google search: "state of wisconsin no cap on autism insurance"

I think this means that it's time to address autism insurance issues again! [Updated 11/13 to add: I am a well-informed lay-person on these issues, but not in any official capacity. (Want to hire me?) My links are good, but my writing does not have official backing or vetting of any organization.]

Here's the very quick recap: Wisconsin's governor Jim Doyle signed an autism insurance requirement as part of the state budget on June 29, 2009; requiring certain insurers to cover intensive-level autism treatment to the tune of $50,000 per year (with age limits and for a total of four years), and post-intensive at $25,000 per year (no age limits).

I've been documenting this for several years along the way, and have a separate page on this site compiling my writings on the subject. Here also are some links with more information on Wisconsin's autism insurance requirement.

I'll do another post on how that's all going. It's been an interesting ride. Joy's experience has been relatively smooth, though not without frustrating questions along the way. Other people's experiences have been much rockier.

Now another very fine development is coming down the pike -- with the potential to be an immense help to some Wisconsin residents, but also adding an extra layer of confusion and uncertainty until the details are worked out. This new development involves the lifting of the $50,000 and $25,000 caps.

On October 3, 2008, then-president George W. Bush signed Public Law 110-343, the Paul Wellstone & Pete Domenici Mental Health Parity and Addiction Equity Act. This law is aimed at group health plans with more than 50 employees that provide mental health and substance abuse coverage as part of their benefits. The law aims to ensure that mental health financial requirements and treatment limitations are no more restrictive than what the plan specifies for medical and surgical benefits. There's a fine factsheet at Mental Health America that goes into much more detail.

The Wellstone/Domenici Act of 2008 was initially supposed to take effect Jan. 2009, but the insurance rules were not hammered out and published until Feb. 2, 2010. Here is the link to the applicable rule in the U.S. Federal Register (in PDF). On page 11 of the above-linked rule, under applicability date, it says the rules are effective for plan-years beginning on or after July 1, 2010.

Governor Doyle heralded the federal legislation and rules, and made it very clear his administration's interpretation that mental health parity applies to autism, in a March 1, 2010 press release under the headline:
Governor Doyle Announces Expanded Health Insurance Coverage will Benefit Families with Autism
New Federal Laws Will Further Help Children with Autism Access Full Treatment

[Update 11/13, paragraph & quote added] More importantly and officially, this is also the position of Wisconsin's Insurance Commissioner, as included in the final WI OCI rule on autism insurance, which went into effect this October. On page 4, the rule explicitly includes the position that federal mental health parity applies to autism in Wisconsin:
Although there is no direct federal guidance that autism spectrum disorders are subject to federal parity requirements, it is the position of the Commissioner that parity for autism services does apply to group health plans with more than 50 employees based upon preliminary review of the regulations.

We've been aware for some time that at least one of the large health plans in Wisconsin has been pro-active about lifting the caps for autism insurance coverage -- because if you don't have similar caps for surgical/medical treatment, you can't have them for mental health treatment including autism. For us, that's slated for January 1 when our plan renews.

However, we've heard that other plans are not addressing this, or have been trying to push the issue off till January 2012.

Part of this was apparently being enabled by the State of Wisconsin Department of Employee Trust Funds, the entity that administers health plans for State of Wisconsin employees. Their parameters for plans covering state employees were originally written to allow the caps to remain in place for the extra year. When JoyDad found out about this, the phone-calls and e-mails flew, buttressed by the links from the Federal Register and Doyle's press-release -- making it clear that the effective date needs to be January 2011 for state plans and that Governor Doyle's press release made it very clear that his office interprets the parity legislation to apply to autism.

It might have been coincidence (but I think not) when JoyDad got a communication from ETF saying that, after further review, their legal counsel determined that the autism benefit dollar limit would, after all, need to be lifted for state-employee plans beginning January 1, 2011. The correction has been posted, and here's the quote:

On Page 72, the Schedule of Benefits in Uniform Benefits erroneously lists dollar limits for Autism Spectrum Disorders. The bullet should be removed.

On Page 97, Item 6, Coverage of Treatment for Autism Spectrum Disorders erroneously lists dollar limits for the benefit in the second to last sentence. It should read: “Benefits are payable for intensive-level and nonintensive-level services.

Our insurance plan will be lifting the autism-coverage cap for our (state-government-employee) plan starting January 2011, as they had intended.

All the other insurance plans that compete for state employee coverage will have to do likewise. It's unclear what this may mean for their non-state-employee plans. If your health insurance plan in Wisconsin is not intending to lift the caps when your plan renews, you might want to use information and links from this post to help you advocate with them.

The upshot: Wisconsin state government employee insurance plans, and at least one forward-looking insurance company more generally, are lifting the autism coverage caps as of January 2011.

Other insurance companies are not yet on board.

Still other insurance companies are not included in Wisconsin's autism insurance mandate in the first place, nor by Wisconsin's version of mental health parity. A somewhat smaller set is not even included in the federal version of mental health parity.

And, there's been a big election here. For the past two years in Wisconsin, both houses of the legislature plus the governorship have been in the hands of the Democratic party. In the wake of the 2010 elections, all three have flipped Republican -- and quite hard-right Republican at that. I have been told that the new governor Scott Walker has some insight into, and support for, autism-related issues. I also know that the Republican party has not been supportive of insurance mandates in general. [Updated 11/13 to add the following sentence] And, the Insurance Commissioner is appointed by the governor.

Stay tuned. This story is still being written.

Meanwhile, if any of you know how mental health parity is playing out in other states regarding autism coverage, please share in the comments!

UPDATE 11/11 -- This post originally included a paragraph about 2009 WI Act 218, the Wisconsin Mental Health and Substance Abuse Parity Act, signed by Governor Jim Doyle on April 30, 2010, an act which in general strengthens the Domenici/Wellstone parity act, applying it to smaller companies than the federal legislation. However, WI Act 218 contains an exception for autism. The federal act contains no such exception, so the federal rules still apply when it comes to autism (as Governor Doyle celebrated in his press release).

Monday, November 8, 2010

Missing Teeth of Yesteryear

Should auld toothlessness be forgot, and never brought to mind?

JoyMama's first two missing teeth
Should auld toothlessness be forgot, and the days of auld lang syne?

JoyMama eats corn with missing teeth
JoyMama's teeth grew in crowded. She needed braces. She doesn't even want to think about what this might mean for the next generation.
We'll go one tooth at a time.

Friday, November 5, 2010

Wiggle, Wiggle

About a month ago, as we were vacationing up at the family cabins, we noticed that something looked a little different about Joy's smile. One of her two lower front teeth was just slightly displaced, poking forward just a fraction.

Her first loose tooth! At the age of 6 1/2, the time was right.

I had wondered how this was going to go. What would Joy think? Would it bother her? Would she wiggle it all day and night? Would she even notice? Would she swallow it in her sleep?

Her experience was so different than mine. I was a mega-wimp about my first loose tooth. I had an over-active imagination and was terribly afraid of pain. Those jokes that grown-ups always make, about getting out the pliers or tying a string to the tooth & doorknob, scared me silly. I ended up going far out of my way to keep that wiggly tooth from notice, wouldn't let anyone touch it, barely touched it myself. Eventually it got so loose it came out when I bit into a grape. (Update: the caption on the first picture in my Nov. 8 post, in my old photo album, says that my second one came out on the same day as the first, and I brushed it out with my toothbrush. Doesn't mention the grape. Amazing what we remember, and don't.)

Joy, on the other hand, didn't seem to notice much. I helped her wiggle it a bit from time to time, but figured that nature could take its course.

And then I saw the adult tooth pop through. Behind the baby tooth, like a shark, rather than underneath. Arggh. I immediately had visions of an extraction at a dentist appointment, complete with sedation.

So I started wiggling harder. Several times a day, I'd tell Joy "wiggle, wiggle!" and see if I could get into her mouth to loosen that tooth. It turned out to be one of those moments when sensory-seeking worked in our favor. She soon learned to echo "wiggle, wiggle" and open up for me -- and let me really wiggle it good, sometimes even bloody. More often than not, after I gave it one good wiggle, she'd reach for my hand and show me that she wanted me to do it again!

The tooth was stubborn, but it did get looser and looser. Last night, as I was giving it the big wiggle treatment, it finally popped out.

Look at the spike that thing still had on it!

And look at the big-girl grin afterwards:

We're not doing tooth-fairy. It just doesn't make sense with Joy at this point. We are doing a special homemade waffle breakfast with home-grown frozen strawberries, though. Which I'm about to go and prepare, for my big girl and her proud sister.

Wednesday, November 3, 2010

A Halloween to Remember

I have the good fortune to have settled within walking distance of a dear college classmate of mine -- someone I met the first week freshman year. We went on to bear girl-babies within 5 months of one another, and they too have become fast friends. Every year since Halloween 2002, including this one, Rose and her neighbor-friend Elizabeth have trick-or-treated together.

At the end of the evening on Sunday, I wound up at their house while Rose and Elizabeth sorted through and traded their obscene hauls of candy. JoyDad & Joy had called it a night earlier, but I was able to hang out for a bit and join the entertainment of looking at past years' Halloween photos on the computer.

How young we all were, back in 2002 when a one-year-old Elizabeth-lion with an orange pacifier visited a few houses with a white-bunny-rabbit Rose! In 2003 I created my first homemade kiddie-Halloween costume for Rose, discovering the versatility of solid-color sweats and sticky-back felt. (My mother never did make a homemade costume for me -- multi-talented though she was, crafty-ness was not among her many virtues). Despite the preggo-nausea that went along with gestating Joy, I managed a rather delightful ladybug outfit for Rose.

Then came Joy. For Halloween 2004, at the age of 5 months, she wore a fuzzy bumble-bee outfit that I'd snagged at a thrift shop.

I created a homemade bee costume for rose, and got a sweet, sweet photo of the two sister-bees on Elizabeth's sofa. We didn't know it at the time, but that was the only good sister-photo we'd have to look back on when we flipped through the old photos this year.

Not in 2005, when Joy wore Rose's old bunny costume and Rose went as a homemade carrot.

Not in 2006, when Rose talked me into costuming them as hula dancers like Molly in the American Girl books -- and then Halloween night was downright wintry!

Not in 2007, when they'd just been flower girls in their aunt & uncle's wedding, so we re-used the dresses, but Joy was sick that night and couldn't even go out.

Not in 2008, when Rose dressed as Lucy the Diamond Fairy and Joy was her diamond.

Not last year, when they went as black-n-white Dutch bunnies. I made them both fleece bunny-hats and taught Rose to make homemade pompoms for the tails. Joy protested the whole costuming & trick-or-treat affair that year. So disheartening, I didn't even feel like re-hashing it on the blog. We didn't get a single photo of either girl that year.

And then came Halloween 2010.

I had very strict requirements for Joy's outfit this year. Nothing on her head. Nothing dangly & stimmy. No boxes, no wings. Meanwhile, Rose decided early on that she wanted to be a pirate. Arrrr.

Here's what we wound up with: a pirate wench (boughten costume) and her hook.

Didja see that? They're standing together. Joy is smiling! We got THREE good shots of the sisterly duo, plus another shot of the whole costumed trick-or-treating crew (4 girls + 2 costumed parents). Joy cooperated happily with the whole photo shoot.

We were still a little nervous about the trick-or-treating, and had planned that carefully too in the wake of last year's debacle. Only a few next-door neighbors were on the agenda if that was all Joy could handle, and then the older girls would continue on. But Joy walked nicely, stayed upright (i.e. very little stimming in dirt & leaves), stood with Mama on the steps, squealed & jumped when the treats went into the bucket. We went all the way up and down our street with her, and probably could have gone more.

It is so nice to have a photogenic Halloween for once, amid all the school struggles and health struggles this fall.

Ahoy, onward to Thanksgiving, me hearties!

Sunday, October 31, 2010

Meds and More

And I thought I had a lot of meds-information to absorb when it came to Abilify. Heh. Welcome to the JoyFamily infirmary.

I started feeling achy a week ago Thursday, and Joy began fighting a cold that week. We went downhill from there, and JoyDad eventually joined us on the slide. Monday Joy got diagnosed with an ear infection (and got a not-strong-enough antibiotic that we had to replace later); I got diagnosed with pneumonia. JoyDad joined us on antibiotics later in the week. Much doctor-appointment-ing, wearing of masks, chest-X-raying, etc.

Meds, meds, and more meds! Analgesics for the aches and fevers and chills; codeine-laced syrup for the cough; antibiotics for the infections; laxatives for constipation side effects; sleep aids for brain-racing side effects; more analgesics for headache side effects. Then there were the merely annoying side effects that didn't rise to the level of further medication: loss of appetite, bad taste in the mouth, mild nausea, a diuretic effect. (Not all effects were experienced by all JoyFamily sickos, by the way, as we had different med-cocktails.)

And we thought we were maybe going to be able to sort out the effects / non-effects / side-effects of Abilify? Again I say: Heh.

Fortunately we are all doing better, well enough to go out trick-or-treating tonight. We managed to buy and carve pumpkins yesterday, and I *so* wish I could post the photos! but I'm going to stick to my pseudonymous bloggy principles after all. Joy posed like a pro, hugged the jack-o-lanterns, leaned in next to Rose and gave a wonderful cheesy smile right into the camera. [E-mail me or drop a note in the comments, and I'll send a copy via e-mail. Unless you've never commented before or some such.]

Joy and I also got to go out adventuring on a nearby patch of short-grass prairie. The sun shone with that amazing slant-light you get in northern climes as days get short, and she had such fun zooming around on the paths and in the grass. It's one of those few places where she can run safely as much as she likes, and I don't have to be right on top of her. Plus there was nobody nearby for her to cough on. Just us and the hawk that frequents that area of town, way above our heads. As Rose would say, "Mama, that's FRIGHTFUL!" Because the hawk's name is, in fact, Frightful.


Monday, October 25, 2010

Saturday, October 23, 2010

Musings on a Package Insert

How many of you, other than health care professionals, have actually read all the way through a package insert for a medication? If you are taking or administering any meds that come in their original packaging (as opposed to pills that the pharmacy counts into their own bottle), you've probably at least seen them -- a large thin sheet of paper, covered with miniscule type, folded into a small square. I have to confess, I usually don't go into such depth, preferring to seek summary information online if I need more than what the doctor tells me verbally.

But package inserts are available online too, and I've been poring over a particular one: Abilify (aripiprazole), one of two FDA-approved meds for "treatment of irritability associated with autistic disorder (including symptoms of aggression towards others, deliberate self-injuriousness, temper tantrums, and quickly changing moods)" in children ages 6 to 17 years. The Abilify insert prints out to eighteern 8.5x11 pages in two columns of something like 8-point type. It's so long because Abilify is approved for use in 6 other ways other than pediatric autistic irritability, including particular situations around depression, schizophrenia, and bipolar I disorder. For all seven indications, the insert has to recount studies, warnings, side effects, dosing, etc.

Here are some of the things I learned about Abilify from the insert:
  • "The mechanism of action of aripiprazole, as with other drugs having efficacy in schizophrenia, bipolar disorder... (etc.), is unknown." In other words, studies show that it works, but we don't quite know why. Yikes.

  • These were placebo-controlled trials, so some study participants got the drug, while others got a sugar pills, and they didn't know which they were getting. 10% of participants who got Abilify dropped out of the trial due to side-effects. Meanwhile, 8% of participants who got the sugar-pill dropped out due to "side-effects"!! Oh, the things we see when we're expecting to see them...

  • 21% of participants on the drug reported sedation; 17% reported fatigue. But at a lower dose (which can be effective), the reports of fatigue were only 3.8%. The insert didn't note any dose-differential on reporting sedation. One in five is pretty high. Something to think about for sure.

  • There's a seizure-precaution in the "Warnings" section of the insert -- and of course Joy has epilepsy, though it's been well-controlled for over two years now. A small number of participants did have seizures during the trials. For the peds studies, that was 1 in 611, combining the autism studies with the bipolar & schizophrenia studies. This does not scare me so much as one might think; up to 40% of people with autism experience seizures, and one of the times those seizures tend to come on is adolescence -- as in, the age of quite a few of the study participants.

  • One thing I didn't find on the insert was anything about differences between boys and girls. Which isn't surprising, since there are 4 boys with autism to every one girl, so the "not looking at the issue" shortcoming is shot through autism research in general. But still.

Perhaps you can guess why we're investigating this, given my earlier reports on Joy's difficult entry into kindergarten, and the injuries she's been causing to self and others since.

The vast majority (95%-ish?) of the "explosive acts," as we've been calling them, happen in 3 limit-setting situations:
-- Joy wants something she can't have
-- Joy has to do something she doesn't want to do
-- Joy has to stop something she's enjoying

Her response is explosive and swift, with no warning to allow intervention. Her Agency 2 staffers call it "zero-to-sixty." For a while, based on a school tally that started mid-September, up to half the "explosives" were directed outward, mostly at staff since that's who she's mostly with, but at other kids too when they're in range. Which means, of course, that it doesn't feel safe to have her around her classmates much.

I think she's bitten 4 (or 5?) staffers badly enough that they've had to seek medical attention.

Interestingly, things have gotten some better in recent weeks. We haven't really had a day described as bad/challenging by school staff since our trip up north. There are more stretches of contentment at school, leading to notes like "short but calm music class 10 min -- enjoyed keyboard play." It's felt better at home too. JoyDad and I feel less under assault, less on pins & needles. On the other hand, the total "explosive acts" tally at school is still in the range of 20 to 40 per day: biting, hitting, hairpulling, headbanging. It's just shifted to self-inflicted rather than outwardly-directed. There's been enough self-hairpulling that her hair is getting noticeably thinner again, though not (yet?) near the level it was last year when her hair became a stim toy and we had to cut it all off.

The psychiatrist we've consulted with Joy is ready to start her on Abilify right away if we want. We are still mulling. We may start this week, or wait a week ro two and see if things continue to improve such that the tally goes down. Either way, we are thinking not to tell Joy's school staff or Agency 2 therapists what we've decided (nor you, gentle readers, as the staff & therapists do check in with Elvis Sightings). We're hoping that their (blinded) observations might serve as a counterweight to ours, which will obviously be informed by a knowledge of whether we're giving Joy the drug or not.

One final note. Up until now I have not named any medications on this blog, other than one incident with JoyDad. That has always felt like a bridge too far in terms of privacy. However, in our information-search about Abilify (and Risperdal, the other of the two), one thing I did was do a Google Reader search on all the blogs I follow. I came across gems like this:
Overnight, it seemed last December, the amp was turned down on his rage. His ability could shine without the glare of interruption or explosion. Suddenly, there was a filter on his impulses and reactions. (But it only lasted 10 months, as the post went on to elaborate.)

Or this:
Enter Abilify. This tiny little pill instantly and quite dramatically reduced (X)'s aggressive impulses. I'll never forget when, just a few days after starting taking it, (X) gave me a big hug and excitedly reported: "Mom, I don't feel like hitting you anymore!" I still get chills thinking about that day. It was miraculous.

I know, these are anecdotes, not studies. But it sure helps put a face on some of what the studies have to report. And by naming drug-names in this case, I'll be putting Joy's experience into the hopper for future questioners who think to do a search in their blog reader (or just on Google in general).

Think good thoughts for us, whatever we decide to do these next few weeks.