1 in 88, 1 in 252, 1 in a million

The new autism-prevalence estimate numbers are out from the Centers for Disease Control.

One in 88 is the new number. One in 54 among boys, one in 252 among girls.

For Joy, I'm also always aware that the autism diagnosis is on top of her linear nevus sebaceous syndrome, for which numbers are not collected and estimates are rough and wacky. My guess is that the combination makes her, yes, one in a million. At least.

Nobody really knows what the numbers mean (though opinions abound) -- how much of this increase heralds a new and dramatic change for who we are as human beings collectively, and how much involves increased recognition of who we've always been. And here we sit at the close of Developmental Disability Awareness Month (March) and the opening of Autism Awareness Month (April) and I find myself wondering together with Commissioner Sharon Lewis of the Administration on Developmental Disabilities:

At what point do we move from seeking simple awareness about intellectual and developmental disabilities to expecting meaningful respect for people with ID/DD?

Here is our beautiful one-in-a-million Joy:

The artwork above is courtesy of a drawing program on Joy's new iPad, whereby we can easily take photos and trace them via the touch screen. No, she didn't do this herself! Joy actually doesn't like the drawing program any more than she likes to draw on paper. But I think I'm going to need an entire post or more for the iPad, and this one isn't it. The rest of this one is actually about an outing last weekend to the local arboretum, on a one-in-a-million spring morning that came five or six weeks early for how Wisconsin usually operates. (Does this herald a new and dramatic change?)

The cherry blossoms were out in full magnificence:

Joy got to smell the blossoms with a bit of help from her sister:

You can see that we're going to be sun-screening the scalp again this summer. Yes, I did have to reprise the almost-buzz-cut routine again due to stimmy hair-pulling. On the bright side, now that we're on our third go-around with this, it's gotten a whole lot easier than the first time we experienced this.

But speaking of delightfully-stimmy things -- I think that Joy's favorite part of the trip was a bush whose excellent qualities could be experienced in any season:

I think there will be more arboretum trips in our future this summer. It's good cheap entertainment, seeing as how we weren't winners of $640 million... (Yes, JoyDad did go and drop $5 for the thrill of it all. Rose was fascinated -- she'd never seen a lottery ticket before!)

Keep calm, and carry on...

Wide Open Spaces

The pace of my blogging continues to gravitate toward a more widely-spaced output. The to-do list feels long. I keep hoping that I'll move into a good rhythm with the school year -- maybe I just haven't gotten there yet.

Joy got a brand-new wide-open space herself a week ago at school... she's now missing a front-tooth! It's been quite a while since the bottom two came out, almost a year now, so I guess we're due. This one came home a day later than it actually came out. In fact, the news came a day late too! The tooth had disappeared right at the end of a rougher-than-normal day, after Joy's school staff had already filled out her daily log, and it got missed in the brief verbal "how was her day" as well. Her SEA had not been back in the building a minute before I noticed that gaping new hole!

I figured she had maybe swallowed the tooth, and was giving her staff enough of a run for their money that it had maybe gone unnoticed, seeing as how she wouldn't have made a fuss about it... but Tuesday morning we got a belated tooth-loss report as soon as we came in the school door, words-tumbling-over-one-another apologetic! And then by the time I picked her up Tuesday afternoon, the missing tooth had been found as well, and was stowed in a little plastic treasure chest in her backpack.

Doesn't that look like a first-grade smile, though?

The other wide-open space we've been dealing with lately is one that dates back to the beginning of the summer, when we starting having another bout of hair-pulling-out. Over the course of a week or two, Joy managed to create a noticeable totally-bald patch along her nevus-removal scar, even after I gave her a short haircut to make the hair harder to grab. This time I opted not to go the full buzz-cut route, planning to even things up through future haircuts.

But before we got as far as haircutting, another space-within-a-space opened up. I think it might have started as a mosquito bite right on the scalp-scar, that Joy scratched open the way she generally does with mosquito bites. Long after the summer bites on her legs healed, the one on her head was still open. For a while she semeed to be scratching it for stimmy-delight, then it turned into a self-injury frustration lash-out thing. (What, I can't get through that forbidden door? Well, SCRATCH MY SCAR!)

Scratch after scratch, the start of the school year was approaching and the wound was getting bigger instead of smaller. Complicating the matter was our long-standing experience that band-aids only draw further attention to any boo-boo, by encouraging picking. So we knew that putting on a band-aid would just make things worse.

Except -- the other thing that we might have remembered is that Joy's mixer-board switches do tend to flip between settings, from time to time. After a few days of school and a Labor Day weekend full of scab-scratches, I finally decided that trying a band-aid couldn't be any worse.

She left it on for a couple of days. Long enough to begin a cycle of some healing... it's been three steps forward, two steps back since then, including a resumption of unwillingness to wear the band-aid, but we've been making progress. Perhaps by the time the hair grows back, the wide-open space will have closed again for good!

Keeping Busy

Lots of busy, so far this summer.

Rose decided that she rather liked the sidewalk-chalk activities from our trip to the Capitol the other week. Since we haven't taken the opportunity to do any more political work downtown since then, she brought the sidewalk chalk to our own neighborhood, creating a collaborative mural all over the driveway apron that we share with a couple other homes.

She didn't just draw it all herself, though. No, she invited the neighborhood in, with chalked-invitations all the way up the street:

She drew blank boxes for others to fill in, drew a snowman for others to add features to, solicited responses to little jokes. Then she left chalk out to see what would happen... and people came! We saw several adults stop and add their doodles on their way down to the restaurant or local grocery. There aren't many children in our neighborhood, but we got enthusaistic participation from several of the kids nearby.

Joy, meanwhile, continues to busily request our involvement in little interactive games too -- such as peek-a-boo.

Like the new cut? I get better at the boyish cut every time I do it, though Joy isn't really fond of getting it done and makes the activity a challenge. I pretty much had to do it, though, and here's why:

Again. Dangit.

Yes, she's been busy once again, stimmy-pulling out her own hair, mostly along the line of her nevus-scar.

I didn't want to take it all the way down to a bald-buzz this time. But I may have to yet. She's still working on trying to pull the stubby little hairs that she's got left.

At least it's summer. Her scalp may get too much sun, but it won't be cold.

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:

(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

Education of a Self-Taught Hairstylist

Nobody ever taught me to cut hair. Sure, I butchered my Barbies' locks as a tyke (didn't we all?) but my experience with barbering humans has been sadly lacking.

It's a good thing my girls are tolerant of my experimentation!

I started with Rose because I'm a cheapskate and didn't want to spend the money at a salon. With Joy, I'd rather fight any sensory battles at home than in a salon. Plus I'm still a cheapskate.

Here is the progression of hairstyles that started when Joy was pulling out handfuls of her hair in the spring of last year.

Somewhat shorter so as to provide less target for grabbing:

Buzzcut so as to provide no target for grabbing (and let it all grow back in evenly):

How the beautiful layers looked this summer after growing out of the buzzcut for a year:

How the layers look now, after my educational first attempt at a layered cut, so that we don't have the combing battles that the lovely long hair was starting to produce:


It could have gone better. But it could have gone worse. Joy wears it well no matter how I botch it. And, like the buzzcut, it will grow out and I will have further educational hair-cutting opportunities in the future!

Spring Shearing

Rose has been growing out her hair for quite a while, other than a trim or two. She had planned to let it grow out enough to cut a 10-inch-long donation to Locks of Love, but it was starting to be a hassle to comb and otherwise care for, and she wanted it out of her face.


So she asked me to cut it short.


Came out pretty cute, if I do say so myself, though that perhaps has more to do with the wearer of the hair than with my scissoring skills. The 6+ inches of hair that came off was not wasted -- she had heard in her 2nd-grade class that there was an organization collecting hair to make into booms to soak up oil from beaches (the Gulf spill will surely be soiling beaches soon, alas). I did some poking around and found out that the salon where I usually go is sending their hair-clippings to A Matter of Trust this month. When I went for a cut this week, I took Rose's clippings as well, along with some fur that she'd pulled out of our indignant shedding rabbit's hindquarters.


JoyDad got a cut there too earlier this week, which leaves just one of us.

Longtime readers will remember the hair-pulling, hair-cutting drama last spring. The April 2009 shearing looked like this:



Guess what happens when you let a buzzcut grow out for a whole year?

It turns into the most lovely regular feathery layers you've ever seen.



I just can't stand to cut it yet, even though it's starting to get long enough that Joy puts it into her mouth sometimes, and it's also becoming a hassle to comb after bath.

I'll never manage layers like that again, unless we bring back the buzzcut. Which is not on the agenda right now, even if all the cool/beautiful women have tried it!

Maybe when the weather gets warmer, I'll figure out a new hairstyle for Joy, somewhere in between the shearing extremes.

A Tale of Two Surgeries

We've been moving toward two different outpatient surgeries for Joy, for a while now.

One of them has to do with the scar from her nevus-removal. Joy had three surgeries in her second year of life to remove the nevus-sebaceous "blotch" from her scalp, so that it would not run the risk of cancerous changes later in life. Cosmetically, it was good to have it gone too! It healed up quite neatly, but her scalp stretched as her head grew, and now the scar is about a quarter-inch wide. Nobody notices it when her hair is long, but last year when she had a buzz cut so she wouldn't pull out all her hair by the roots, you could see it pretty clearly:



Way back when she had the surgeries, the plastic surgeon advised us that we'd probably want to do a scar-revision surgery once Joy's head had grown, maybe before kindergarten -- and that our insurance generally covered scar-reduction because it was a follow-up to the original covered surgeries. We were going to get it done last summer, but then we had other health issues to contend with and decided to wait till this year.

Meantime, we discovered that Joy has a small umbilical hernia. With many kids, little childhood umbilical hernias close up on their own by the age of 5 or so. And when it's as small as Joy's is, even past age 5 they'd normally leave it alone. But we've got a bit of a family history -- JoyDad had such a hernia that "popped" on him as an adult (as in, lots of pain and two surgeries, one on an emergency basis). Plus, Joy has unusual pain responses and isn't reliably able to show us where it hurts, just in case things did go wrong with hers.

Fortunately, the surgeons to do both procedures are in the same network. Joy's pediatrician helped us come up with the clever idea to do both the procedures in one event, so we'd only need one go-around with the anesthesia. The surgeons agreed, their schedulers got us all set up, we were on the calendar for June 2...

And then our insurance denied the scar revision. JoyDad went to a hearing to make our case, and they denied it a second time. Further pursuit of the case might involve legal consultation, and would certainly not be settled in time for the scheduled surgery date.

Our current plan is to pursue the hernia repair, but not the scar revision.

Thought experiment: what if these surgeries were for Rose instead of Joy? Would we react differently?

I can tell you right now, for Rose the scalp-scar would be a BIG DEAL. She's sensitive about her appearance, sensitive about teasing. If she reached adolescence with such a scar, it would be an emotional issue and a decided challenge to overcome (though I've no doubt she'd deal with it if need be). Pushing the case would be worth some sacrifices. I think I'd feel the need to at least consider the out-of-pocket option.

If Rose had the hernia, however, we could let it ride. She could tell us immediately if something did get to the point of hurting.

Meanwhile, Joy has shown no self-consciousness whatever about her appearance so far (and why should she, adorable as she is, in our unbiased opinion?!) She interacts with mirrors enough to be drawn to them and make funny faces -- does that mean she knows its her, though? As far as noticing teasing, we've been fortunate that she hasn't encountered it yet. Though of course she's off to school in just a few months.

But it doesn't take a scar to mark Joy as different.

Given where we are right now, and what we know about autism and about the world: the people who are sufficiently open of spirit to accept Joy for the amazing person she is, are going to be entirely unfazed by the presence of that scar.

The people who are going to be cruel to her will find plenty of differences before they even notice her scar.

Plus, the scar may simply never matter to her, even if/when she becomes aware of it. And if it does turn out to matter? Maybe that's something she ought to get to decide when she is at a point to be making such decisions.

With the hernia, though, that could potentially turn into a medical emergency. Even, possibly, way down the road when JoyDad and I might not be around, and nobody remembers that JoyDad had a hernia history. And we can't guarantee that Joy will be able to communicate about it.

So we're on the calendar for a hernia fix, still in early June. Think good thoughts for us, that the surgery goes smoothly and doesn't put any major setbacks into Joy's wonderful developmental progress these past weeks, and that we've made the wise call.

Photo Wednesday: Buzzcut Drawback

Here's the one big reason that Joy's buzzcut is probably not a long-term "look" for her:


It's the scar from her nevus-removal. When her hair is longer, the scar hides nicely. With the buzz, it's as exposed as can be.

Rather a bummer, really. The short cut is so cute on her, otherwise! And SO easy to care for.

So as not to end the post on a down note, here's a reason to be cheerful: the tulips in our front flowerbed.

What's the Buzz, Tell Me What's Happening?

On Sunday Joy was still getting used to the new "buzz". (As were we all.) She stopped attempting to pull almost immediately, and started occasionally doing what I like to do with it... rub her hands all over it. Not ideal at meals, but hey, clean-up is a breeze!

I also like to kiss that darling fuzzy head. Awwww.

I think the new cut makes you focus more on her gorgeous features. Like the long eye-lashes, and the glorious smile.

We also noticed that the cut makes her look startlingly like a certain little boy in old home videos from Chicago in the 1960s. Except it's not so much JoyDad. It's his older brother, Uncle Marathon. I'll have the family weigh in on this at Easter time, see if they see what JoyDad and I see. Meanwhile, let me assure you all, there has been NO wife-swapping going on!!

It was interesting taking Joy to church all shorn on Sunday evening. We had her dressed in a gender-neutral orange long-sleeved T-shirt, and from behind she was easy to confuse with another little blond guy in her Sunday school class, though his "buzz" is not currently so extreme!

Little-blond-guy's dad advised me that if we were going to maintain this hairstyle, the best bet for a sturdy effective trimmer would be to go to Farm & Fleet and get one from the animals section. The one their family uses is marketed for dogs. He said this tip came from a hairstylist who said the animal-coat trimmers are made by the same manufacturers as the salon trimmers for humans, but sold for a fraction of the cost. Who knew?

I was also reminded at the Sunday service that there are at least two adult women in the congregation who are currently sporting buzzcuts. Joy is in stunning company there as well.

Finally, I'll leave you with this poem that was printed on the bulletin and used in the service. It's called Walking Blessing, and reminds me of blogfriends who have been walking for a cause, like jesswilson and rhemashope. It also resonates for the journey as a parent walking with a spectrum (rainbow) child. Here 'tis:

Walking Blessing
by Jan L. Richardson

That each step may be a shedding
That you will let yourself become lost
That when it looks like you're going backwards
you may be making progress
That progress is not the goal anyway
but presence to the feel of the path on your skin,
to the way it reshapes you, in each place it makes contact
to the way you cannot see it
until the moment you have stepped out.


Peace.

In Stunning Company

Natalie:

Tyra:

Demi:

Joy:


Rock that buzz cut, sweetheart!

String... String... STRING!!!

When my brother Uncle Schnirelmann and I were kids, we had a silly little in-joke game called "string."

I'm not sure how it started, but it involved feigning a fixation on string. Think zombies moaning for "Braaains!" Our signature moan went along the lines of: "String... striiiing...STRIIIIING!!"



Then we'd greedily grab and pretend to obsessively play with whatever piece of string triggered the joke.

Well, the joke's on me, my friends.

Joy's hair-pulling stimmy activities didn't come out of nowhere. The dimmer-switch has actually been sliding for quite a while.

It started with dolly hair, as far as I can tell. My Little Ponies. American Girls. Barbies. Most of which, by the way, belonged to Rose. Miss Rose has been generous with the ponies, but the others have been rather a cause of contention.

Then it spread to other stringy things. She started picking up hair and fuzzy bits from the carpet, and gravitating to toys with strings. Here's what her OT reported on the subject on March 18:

Joy was really drawn to stimming activities today. It seems like every where there was a string for her to twist in her fingers. It was me against 10,000 pieces of string!

The hair-pulling seems a natural extension (though I guess you can't wear extensions if you don't have any hair there to begin with...) Here's from Lynda's daycare report yesterday:

She was putting a lot of energy into looking for strings. I took a couple toys out of the room that have strings. Ones she knows are always on the shelf. Even if I turn the toy so the string isn't visible, she knows it's there and will pull the toy out to get to the string. I tried substituting a squish ball thingy that [the OT] had brought for her a while back. She would play with it a few minutes, then go back to tracking down string. A couple good clumps of hair came out when strings weren't readily available.

Joy's been wearing a little pink hoodie-sweatshirt today, to pretty good effect so far. I so very much appreciate all the words of wisdom and encouragement on last night's post! It all feels somewhat more manageable this morning. My best guess is that the dimmer switch will eventually slide the other direction, as it has with many other less-than-desirable behaviors and stimmies.

I still see a potential buzzcut looming in the future, though -- if not as a preventative approach, then in service of evening things up when the hair starts to grow back in! Pixiemama, I don't "do" Facebook, but I bet your shaved head was adorable! Auntie RatM has even more extensive shaved-head/buzzcut experience. Makes her more aerodynamic and all.

Hey brother mine: "String... striiiing...STRIIIIING!!"

Not Alopecia - Trichotillomania!

[UPDATE: Barbara set me straight on the terminology. It's not alopecia -- it's trichotillomania. Two bonus syllables, even!]

Joy's cute new haircut did not stop the hair-pulling.

She's yanking it in clumps now. It's her new favorite stimmy.

Here's how it looks from the top:



Any blogospheric wisdom would be appreciated. Stocking cap? Buzz cut? Bald is beautiful?

Monday Mum...Mum... NUMBERS. Dangit.

As a rule, I don't do memes (little games participated in by all the cool bloggy folk.) Then when I do give in and do them, I always seem to end up twisting the rules somehow. So here's this really neat meme started by Kia over at Good Enough Mama, wherein one posts on Monday using a numbers theme, and she calls it Monday Mum...mum... Dangit, I can't say it. Alliteration be blowed, I've got to call it Monday NUMbers. (Me, have a kid on the spectrum? As a matter of fact, yes, why do you ask?!) Look at the button-thingy above if you want to see the real name.

Anyway. Here goes.

1 = number of new Rose hula-hoop tricks this weekend (hoop goes from waist to neck back to waist again, spinning all the while).

2 = number of rhubarb pies I baked on Saturday.

2 = number of big handfuls that Joy grabbed out of the middle of the pie that was out on the counter Sunday morning.

1 = number of pies that I needed to take for Sunday dinner at GrampaK & GrammaJ's. Whew.

2 = number of items I took seconds of at the amazing wonderful Sunday dinner (wine & turkey; very restrained of me, I thought!)

4 = number of pounds I'd lost since I started trying but before the amazing wonderful Sunday dinner.

0 = number of times I've stepped on a scale since. Don't wanna know.

30 = number of miles I've run in March. So far.

10:08 = per-mile average pace on last Thursday's treadmill interval-training run.

3,465 = number of hairs Joy pulled out of My Little Pony manes this weekend.

10,872 = number of hairs Joy pulled out of her own head this weekend.

1 = number of resulting adorable haircuts (I missed my calling as a beautician, no?)