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.

Anyway.

"Enjoyed Keyboard Play"

Sisters enjoying keyboard play -- now:





And then:



They've grown so much!

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.

Twirling the Stem

When I was young, I remember my father, Joy's GrandpaJ, eating apples in their entirety. Core and all, nothing left but the stem. Then he'd take that stem and twirl it thoughtfully between his thumb and forefinger. This ritual, he told me, was a token of membership in the Stem Twirlers Club -- those who consume the apple core (whether in hunger or in solidarity with the hungry) and then twirl the stem while thinking on one's brethren worldwide in the Stem Twirlers Club.

Joy twirls stems -- of fall leaves. And she eats the entire apple, core and all. (Her school staff recently asked us if that was OK, and we have no objections!) It wouldn't be that big a step to twirling the apple stem. The Stem Twirlers Club strikes me as a delightfully stimmy meditation!

So-called neurotypical folk use other sensory-intense aids to meditation/prayer and remembrance as well...

• lighting the Advent candles
  
• walking the labyrinth
  
• footwashing
  
• praying the rosary
  
• communion
  
• and many more, in many traditions

I got an extra nudge to contemplate these things from a post at Both Hands and a Flashlight this week, called Autism Beatitudes. It's a thought-provoking and lovely piece. Several of my favorites in the list:

Blessed are those who do not speak, for they shall teach us what lies beyond the limits of words.

Blessed are the spinners, for they shall experience life from every angle.

Blessed are the stimmers, for they shall grow their wings and fly.

Blessed are those who are faithful to their rituals, for to them all the world can be a holy liturgy.

The author acknowledged in his post that he is not on the spectrum himself, and solicited feedback from readers who are. I feel a little hesitant myself, as I stand on the outside of Joy's twirling and stimming, at the prospect of assigning meaning to it. What is happening in her mind as she spins the stems or spins herself? Is there a fundamental difference between her quiet leaf-stem twirling, and her teeth-gritting intensity as she stims on a set of car keys? Is it over-romanticizing to think of these things as a potential meditation or liturgy? How similar, and how far apart, are the intense stim-experiencing of a set of Mardi Gras beads and the deliberate, specific prayer experience mediated by the counted beads on the rosary? What level of intentionality does it take for an experience to belong in the realm of prayer/meditation?

I'll likely contemplate these things further next time I find myself with an apple or a leaf in my hands. Meanwhile, I'd love to hear any responses from you!

UPDATE re: responses -- In addition to the thoughtful discussion in the comments, Professor Mother has posted an insightful reflection on stimming and meditation from her own experience. Well worth checking out. See also (don't know why I didn't link this before) the piece I co-wrote earlier this year with Barbara of TherExtras -- not addressing meditation specifically, but lots of thoughts on stimming. And, a detailed insider-perspective on stimming at Reports from a Resident Alien from last month.

Peak Stim Season

Autumn has come to this part of the country, with chilly nights and turning leaves. As we planned for our annual fall getaway to close up the family cabins for the season, I watched the fall-color map on the weather.com web site. Fall-color watching is a tourism activity in and of itself, and the past two years the leaves were pretty much at "peak color" when we closed up the cabins. The fall-color forecast maps gave us reason to hope that the same might be true this year.

But as dawn broke on our drive north, it was clear that the traditional peak had come and gone. Aside from the evergreens and a few bright splashes of yellow birch leaves, everything had already fallen.

And guess what? From Joy's perspective, it was just perfect. The forest floor, and even the roads, had a thick coat of crunchy leaves to shuffle and kick.


The leaves helped distract from the stim that's been driving me & JoyDad crazy lately, which involves grabbing handfuls of dirt and trickling the soil down onto her own body or hair. With all the leaves around, she was more interested in making careful bouquets of the bright birch leaves, assembling and twirling the stems in her hand. Lovely, and much less messy.


Rose enjoyed the fallen leaves too. She and JoyDad went hiking up into the woods, to find the continental divide between the Lake Michigan & Lake Superior watersheds that runs through the family property. Rose also used red & yellow leaves to decorated the chains on the rickety old metal swingset, which was just the right height for Joy to swing all by herself this year.


Other highlights:

• Joy went swimming (Swimming! In the lake! In October!
  
  
• Rose went fishing with her uncles and learned to cast.
  
  
  
• Joy learned to drink from a soda can.
  
  
• Rose played her first game of dice with the grownups in the evening.
  
  
• Joy actually echoed the name of the lake, for the first time ever!
  
  
• We saw some ruffed grouse in the woods -- but not in the cabins.
  
  
• The weather was stunning all weekend -- shirtsleeve weather, blue skies, minimal insect issues.
  
  
• The starry skies at night went on forever.

Unfortunately, vacation is never forever. Back home we had to go, hoping the transition back to school won't be too exceedingly traumatic. At least we got to see the fall foliage in full swing on the ride back home! Tune in next spring for more exciting northwoods adventures.

"Intellectual Disability" is the New "Mental Retardation"

Not quite a year ago, I wrote about a new piece of legislation that had been introduced in the U.S. Senate: "Rosa's Law", named after a girl in Maryland with Down syndrome, that would change the use of the term "mental retardation" in federal health, education, and labor policy. The designated replacement term is "intellectual disability."

I'm happy to report that Rosa's Law has now become actual law, signed by President Obama yesterday. Disability Scoop reports that the measure was approved unanimously by Congress (an amazing development, getting THIS Congress to agree on anything!!) The actual changes will take effect over time, as the relevant documents come up for revision.

If I weren't convinced already that "intellectual disability" is a step from an increasingly-pejorative term to a less-freighted one, a comment from mama edge on my last year's post would have sealed it for me:

You really helped me today. I've been unable to talk to Taz about his mental retardation, but I think I could definitely talk to him about his intellectual disability.

That's the level of what's at stake here!

Now, I'm under no illusions that intellectual disability won't pick up its own negative freight. After all, mental retardation was an immense step forward in its day, from terms like moron and idiot into a more clinical term of art. But now it has become a casual insult, like its predecessors. It's time for it to go.

Maybe the next time we switch terms, a few decades down the pike, we'll be able to come up with one with few enough syllables that it doesn't torpedo the reading level of any document containing it!

Meanwhile -- intellectual disability is the latest and greatest. A fine step forward.

When I Get Older

When I get older,
I will be stronger
They'll call me freedom
Just like a waving flag...
-- Theme Song from 2010 World Cup, performed by K'naan

At Rose's school, the second and third graders are doing an Africa-themed social studies unit and concert. One of the songs she has introduced to us is the South Africa World Cup theme song from this past summer, a song called Waving Flag:



When I get older, I will be stronger.

In the mouths of second and third graders, it's an encouraging note for the future.

Sung by adults, it's encouraging in another way (with maybe just a hint of "when I am an old woman, I shall wear purple!")

I want this encouragement to apply to both my daughters.

The other Friday, I had the opportunity to hear a brown-bag presentation by Dr. Paul Shattuck, autism researcher and professor of social work at Washington University of St. Louis. He's on the cutting edge of a new trend in autism research -- a trend that recognizes how very much autism-research-attention has been devoted to children and how very little to adults.

He's been working with data from a U.S. Department of Education study called the National Longitudinal Transition Study 2. This study has been following a huge sample of young people receiving special education services, starting with youth age 13-16 in the year 2000. They followed the same youth for ten years, with five sets of interviews at 2-year intervals. The interviews (with parents/guardians and with youth who are able to interview) explore special education experiences and the students' transition into post-school, adult life. There are over 900 youth with autism in the survey.

Dr. Shattuck and his team have been analyzing data from the fourth set of interviews, from 2007 when the youth were 20-23 years old.

A couple of findings in his presentation stood out for me.

One was the comparison of services received before vs. after high-school graduation. As one might guess, there's a substantial change and drop-off. Most dramatic: speech services. Fully 75% of the sample with autism received speech services in high school. Of those who had transitioned into adulthood? Sudden drop to 9%. Because magically at age 21 the need for speech therapy goes away, right? Yeah, not so much. It's all about the service system -- schools provide the therapy, insurance and adult services don't. (The way autism insurance is written in Wisconsin right now, speech therapy IS covered for adults, by the way. I wonder how many will be able to take advantage of it.)

The other big one: Dr. Shattuck looked at how many of the post-high-school contingent were completely disengaged -- that is, no employment, no career counseling, volunteer work, education, vocational training, outside commitments, nothing.

That number was 20%. The only other subgroup in the study with a slightly higher number on that score were the young adults in the "mental retardation" category.

The disengagement level was hugely associated with family income level. Only 3% of the young adult autists from families making over $75,000 were totally disengaged. In families making under $25,000, the number was 36%.

It makes me wonder a lot of things. One thing I wonder is what exactly it would take to bridge the engagement inequities -- which of course exist amid so many other inequities.

I also wonder... what's the ideal? Surely the appropriate engagement level varies from one person to another. I don't suppose total disengagement can be spun as a good thing, although there are probably hermits and mystics throughout history who might disagree. But I'm guessing that there are as many forms of ideal as there are adults with autism.

I also wonder what the engagement level was for those who didn't fall into that totally-disengaged category. How many have just one small lifeline into the outside world, for example, versus those with multiple means of engagement?

I also wonder what this survey would look like with 30 year olds. Or 40 year olds. Or beyond.

I also wonder how different / better / worse things will be for youths with autism who are ages 13-16 in the year 2010.

And finally, I wonder what will be the outcome of something else that Dr. Shattuck noted. He spoke of the valiant lobbying efforts of the many families who helped drive the cause-and-cure research that has been where the money and effort has poured -- and pointed out that many of these parents now have kids in their late teens. He sees some of these people turning their well-honed talents to lobbying for adult services. A trend worth watching -- and worth supporting / joining.

I hope for all of us that we will continue to find our strengths as we get older.

Whole Lotta Comparing Goin' On

I met a little Elf-man, once,
Down where the lillies blow.
I asked him why he was so small,
And why he didn't grow.

He slightly frowned, and with his eye
He looked me through and through.
"I'm just as big for me," said he,
"As you are big for you."

-- John Kendrick Bangs

I've written before about how hard it is not to compare. Or, I suppose more importantly, how hard it is not to make destructive comparisons. In the post I just linked, the comparing had to do with Joy's developmental trajectory versus Rose's. In Joy's (still rough) kindergarten entry right now, the obvious comparison is to her neurotypical classmates, with whom she's not able to spend very much time at all right now.

There are many other ways to compare destructively, though. One can make comparisons along the autism spectrum, for example. As in, my child is less impaired than your child, so we can at least feel superior there. Or -- my child is more impaired, so I should feel sorry for myself and you should feel sorry for me and we all should feel sorry for him/her. Or cross-disability comparisons -- I just read an interesting piece at Reports from a Resident Alien from a spectrum perspective, cautioning people with autism against falsely building themselves up at the expense of people with other more "severe" disabilities.

Funny enough, parent bloggers do the compare thing to ourselves too. For example, I've been seeing a delightful set of new spectrum-parent-bloggers setting up blogshop, and find my recent blogging to stack up poorly next to the wit and the insights and the speedy build-up of followings and commenters... as I am posting less often, less in-depth, finding it harder to find suitable words to write about this part of the journey. Difficult not to cringe at the comparison. My dear friend over at Autism in a Word wrote recently about her struggle with becoming too focused on the hit counter and the pats-on-the-back in the comments. I may need to consider doing as she did, and taking a blogging break... but depriving myself of this community might not be healthy for me either.

Then there's the self-flagellation self-comparison within the professional sphere, eloquently expressed over at Professor Mother (another fine relatively-new blog). Oh, does it resonate. I'd been hoping that all the wonderful new knowledge and contacts I'd gained through the LEND program last year would create some new opportunities for me on the professional score, an area of my life that's been less than ideal in recent years -- but that's not turning out to be a obvious path either, particularly in this economy.

I need to figure out how to hang on to being "big for me" and keep out of the destructive comparison cycle. Sometimes it's just not easy to see.