Wednesday, April 29, 2009


It's handbell concert season again, which means the schedule is crazy and my fingers are aching from holding two (and sometimes three!) bells in one hand simultaneously.

So perhaps it's natural that the bells should come to mind in relation to a cluster of posts last week, started by the incomparable Mama Mara, who posted a powerful reflection called Retarded Isn't Stupid, Mama Mara! Then came Cale over at Spectrum Siblings, who posted Retarded Isn't Stupid, Cale! And StatMama followed up with Developmental Disabilities, in which she pointed out that the word "retarded" quite literally means "slow".

And what's so bad about "slow"?

Slow is something we've actually been working very hard on with the bells. We've got a couple of pieces that that derive their beauty from a slow tempo -- like Gershwin's "Prelude No. 2" which Gershwin himself described as a "blues lullaby" but I think is actually a mighty seductive piece, not necessarily conducive to sleep! Another of the pieces, Brahms' Hungarian Dance #5, is chock full of tempo changes... and wouldn't you know, the big challenge is the slowing down (ritardando) in coordination!

Joy does not technically have a diagnosis of mental retardation, though in an earlier version of the DSM that would likely be the box that fit her best. (Diagnostic substitution. Powerful stuff when it comes to arguments about autism and "epidemic" language...) Right now we're calling it "developmental delays" or "cognitive issues" because we really don't know how to tease out what aspects of the delays are mediated by the autism, and what would be there if the autism weren't. Certainly her diagnosis of linear nevus sebaceous syndrome traditionally comes with a mental retardation component -- but not always. And we surely do have the sense that Joy isn't letting us in on everything that's going on in that mind of hers. In the words of her school district team leader: "Her file drawers are full! We just don't have the key to the cabinet."

But whatever word we use to describe Joy's trajectory so far... there's definitely a component of slow.

And why are people so down on "slow"?

I'd been plotting a post about the virtues of "slow" myself, and then I came across a wonderful column in this week's Mennonite Weekly Review, by Melodie Davis, called Slow is Good -- Very Good. It's gorgeous stuff, too good not to share. I'll intersperse her words with mine, OK?

Slow is a walk.

Slower still is a walk with a toddler.

Slow is a porch-swing and a long tall cool drink.

Slow is reading aloud.

Slow is a stew simmering all day in a crock pot.

Slow is incubating a baby for nine months.

Slow is hours of nursing, rocking, dozing with baby.

Slow is the food you started from seeds in the ground in the spring, weeded, watered, harvested, preserved, and didn't consume until the middle of winter.

Slow is melting into the arms of your spouse and just letting the moment linger, not worrying about what's next.

Slow is a delightful pace for what might come next as well.

Slow is focusing totally on the person talking to you during coffee hour at church and not thinking about the three other people you have to catch before they scurry away.

Slow is focusing totally on your child, giving yourself over to whatever activity they're playing, for as long as they care to keep it up.

Slow is meticulously hand-stitching every inch of heirloom wedding quilts for your grandchildren.

Slow is the sewing basket, and a pile of mending, and a classical CD on the stereo.

Scripture encourages us to be slow to speak and slow to become angry (James 1:19). God is slow to anger (Neh. 9:17).

Prov. 14:27 advises that “a patient man has great understanding, but a quick-tempered man displays folly.”

Moses complained that he was too “slow of speech” to undertake the task of speaking to Pharaoh and being a leader for the Hebrew people (Ex. 4:10). Yet look how God was able to use Moses.


And, ritardando.

Tuesday, April 28, 2009

Random Tuesday Thoughts

How nice -- there's a meme out there to match my random mood.

Don't try too hard to see patterns in any of this.

  • Joy was still up in her crib when I got home from handbells after 9pm.

  • Joy is awake in her crib now. Come to think of it, she didn't sleep enough last Tuesday either.

  • My house needs a spring cleaning. Possibly due to lack of winter cleaning. How thick does dust eventually get, if you leave it to its own devices?

  • We bought a new car over the weekend. Actually we put a little deposit down on a Honda Fit that won't arrive at the dealer till sometime next month (it's worth a bit of a wait to get a RED car with a manual trans!)

  • Joy has discovered that the shoulder belt for the booster seat makes a nice pull-toy. Anyone have a favorite 5-point-harness carseat recommendation for kids past 40 pounds?

  • Rose has been trying valiantly to lose tooth number five ("Is it bleeding NOW, mama?") I wonder what tooth-losing will be like for Joy?

  • I had planned to run early this morning. But I'm too achy. Joy & I will go for a nice long morning walk with the stroller instead after we drop Rose off at school. Last time we did this (Friday) we saw a wild turkey at the park!

  • Joy signed "more cracker" at daycare yesterday. Very cool, but feels very Elvis-sighting-ish to me. The singular use of the word "book" (as mentioned the other day) has not re-appeared.

  • How did April get so close to over already?

  • I'm going to go take a shower now. 'Cause April showers bring May flowers.

Friday, April 24, 2009

Sisterly Generosity

Earlier this week Rose's school had one of those Scholastic Book Fair fundraiser things. I am a little ambivalent about how the kids come home with these carefully handwritten wish-lists that they've obviously done in class, but we've generally let Rose pick a book or two off her list to purchase, and chalked it up to community support.

The day of the book fair, Rose came charging home after school with a friend in tow. The friend had invited her to turn right around and go back to school with her mom for the book fair, and Rose really wanted to go NOW instead of have me take her later after Joy's therapy.

So I pulled out the lone twenty-dollar bill from my wallet, rehearsed with her which two books she wanted to buy, and got set to send her off.

And then she said, "Wait, I want to buy a board-book for Joy."

I didn't have any more money in the wallet, but before I could mention this, Rose had galloped off to her room and pulled out the box where she keeps her allowance. She counted out five dollars, which she was going to put in her bra-purse but I convinced her to take something that actually zipped up to keep the money safe!

Here's what she brought home for her sister:

Daisy's Rainbow Picnic

Between the change from the twenty and her allowance money, she'd had exactly enough with just a couple of pennies to spare.

Joy likes her new gift very much. She's been carrying it around a lot, and this evening I had to make her hand it over so I could get her to the table for supper. She said something that JoyDad, the barista and I all agreed sounded very much like "book."


P.S. Just so it doesn't sound like we've got Saint Rose here or something... you should have seen the power struggle we had over clothing yesterday. It was COLD yesterday morning, and Rose wanted to wear capris and sandals to school. I made her wear long pants and shoes, which wrecked piano practice and the rest of the morning's preparation. After warning her that I didn't want ANY complaints about cold on the way to school, I let her get away with wearing a light hoodie for a wrap. Sure enough, about 5 minutes into the walk, the lower lip sticks out:

I didn't knooooow it would be so cold! It's NOT MY FAULT!

Natural consequences are a real booger sometimes. Heh.

Thursday, April 23, 2009

Home, Selectively-Restrictive Home

When Joy had just turned three, we paid a six-month follow-up visit to the pediatric developmentalist / autism-expert who had diagnosed her. We were struggling with some behavior and safety issues at the time. Joy was getting taller, able to reach things on counters and climb onto tables, and she liked the commotion of the results when she managed to shatter a glass or plate.

The expert advised us crisply that we had to strip down our environment. Plastic plates and glasses for EVERYBODY, she said. Pack anything breakable into storage. Consider folding chairs that you can fold up after meals so there won't BE any way to climb on the table. Creating a safe household for Joy comes first.

We were stunned.

We were also... non-compliant. (Heh. We're also not seeing this expert any more.)

Oh, we made a few changes. But they were changes that suited our family. Instead of folding chairs, we just made sure to do a better job of pushing chairs in to the table to make them less appealing for climbing. Instead of ditching our glassware and ceramics altogether, we did a better job of gating the kitchen and putting the breakables away.

I realized at the time that the developmentalist was recommending a chainsaw for a job that kitchen shears could do just as well. What I didn't put together till later was that her recommended changes flew in the face of a very important principle.

Least Restrictive Environment.

Readers who have, or work with, special needs kids in the public education system are nodding their heads in recognition just about now.

The Individuals with Disabilities Education Act (IDEA) includes two fundamental requirements: a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). It also ensures that each child will be served a bowl of acronym soup daily... OK, not really. What the LRE amounts to in the school setting is that you don't shut away or segregate off our kids unless there's a REALLY compelling reason to do so. The presumption is that children with special needs are to be educated among their "typical" peers to the full extent possible.

Who among us wants to be placed under unnecessary restrictions? Either at school or at home?

The trick is figuring out which boundaries and modifications are necessary and helpful for any given kiddo.

The modifications around our house, that we've put in place to have a safe and nurturing environment for Joy, have ebbed and flowed over time. Some things are constant -- in general, we try to help her focus by cutting down the clutter. There's one toy-box in the living room, one in the bedroom closet, and a set of toy-shelves in the downstairs playroom. We try to keep everything easily put-away-able. (Sometimes more successfully than others.)

We also try to keep down the temptation for things that could be pulled down to make a big crash & mess. The Christmas tree was up on the stereo cabinet. There are no plants in grabbing range, though she's growing to the point that she could knock one over if she tried...

Winter 2008 was an intense time for boundaries. Joy was climbing over the back of the couch to jump on the low bookcase that sits back-to-back with the couch, and knocked over the lamp that sat on top of said bookcase. So we bought a hanging lamp with a chain & cord that trails up the wall, and we covered a big piece of cardboard with wrapping paper and set it up as a barrier between the couch-back and bookcase. Joy was dashing into back bedrooms & bathroom at the slightest opportunity, so we kept ALL the doors closed ALL the time. She started pulling the music rack on the piano and dumping Rose's piano books off, so we tied the rack to the back of the piano with a piece of yarn.

In summer 2008 we put in the big barrier, just before I started blogging in fact! We got a fence for our big back yard.
Summer in the Fenced Yard
One might think that a fence was a massive restriction. In a way, I suppose it is. But when we went into the backyard with Joy before the fence, we used to have to be on high alert. She had this little game where she would suddenly dash off, without warning, and head for freedom and the street. And she is FAST. So to keep her safe, we had to be within hovering distance, at all times, ready to sprint at any moment.

With the fence, we don't have to hover. In fact, we can give her a whole lot more freedom within that boundary than she used to be able to have. A perceptive friend at our fence party that summer noticed it right away. "She's so FREE!" was the comment.

It's my belief that as Joy came to recognize and heed the fence boundary, she started observing other boundaries as well. We were able to take down the cardboard from behind the couch. The doors in the back hallway stay open now, and Joy just doesn't venture back there. Rose accidentally broke the yarn on the music rack recently, and we didn't bother re-installing it.

The right restrictions, at the right time. A balance that we're continually trying to keep.

Another issue that we see coming up is the question of Joy's sleeping arrangements. She's currently in a tented-crib for the night, and a PeaPod travel tent for nap. These are designed such that she will not be able to get out, and since she's not toilet-trained, she doesn't really need to get out. It's also very helpful to us to have her confined to the crib when she wakes in the middle of the night and plays for several hours straight.

But she has technically well outgrown the specs of the crib. She's strong and getting bigger. We'll have to figure something else out, that can teach her to sleep in a big-girl bed and keep her safe and not impinge on her sister, with whom she currently shares a room. I don't think we're going to need something like these specialty beds (designed for a least-restrictive environment, by the way -- to "help the person live as normal a life as possible, with as few barriers as possible and still be safe"!) It's good to know the range of what's out there, though, as we make decisions on next steps. "Been-there, done-that" stories would be most welcome.

This post was sparked by Barbara at TherExtras, who is currently hosting a blog-carnival on the question of "how you have arranged your home to enhance your child’s development." I'm looking forward to hear how others have interpreted the theme!

Tuesday, April 21, 2009

Say Hey, I Love You

Following up on yesterday's musings! This song makes me happy.

My mama told me, don't lose you, 'cause the best luck I had was you...

Seems like everywhere I go
The more I see, the less I know
But I know
One thing
I love you!

Sunday, April 19, 2009

Listening With All My Heart

I was reminded this weekend of a poem by Shel Silverstein, from the book A Light in the Attic, about communication differences.

Deaf Donald by Shel Silverstein

Here's the text if it's a little hard to read in the image:

Deaf Donald

Deaf Donald met Talkie Sue
But [signed: I Love You] was all he could do.
And Sue said, "Donald, I sure do like you."
But [signed: I Love You] was all he could do.
And Sue asked Donald, "Do you like me too?"
But [signed: I Love You] was all he could do.
"Good-bye then, Donald, I’m leaving you."
But [signed: I Love You] was all he did do.
And she left forever and she never knew
That [signed: I Love You] means I love you.

Talkie Sue may have been a talker, but she surely wasn't much of a listener.

After reading the latest from Rhemashope over at Autism in a Word (more on that later), I found myself trying to remember:

Did Joy ever say or echo anything resembling "I love you"?

It doesn't seem like something that one could possibly forget. But it's been SO long since we've heard those 80-some words that she used to speak, once upon a time. Among all the people who are working with her now, only Lynda at daycare and one of her school-district people have known her long enough to remember hearing her use words. Right now she has no spoken words at all, communicating via her photo cards when we ask her to, or her push-button when it's available, or the occasional "more" sign, but mostly just actions and glances and gestures.

I asked JoyDad, and he set me straight right away. "No, she never did." He had worked more deliberately than I to try to get an echo of "Love you!" back when there were more words floating about, and it just never came.

But here's what she DOES do:

Hug from Joy

When he goes to pick her up at daycare, she comes running up to him and gives him a great big hug, and sometimes even gives him a little pat-pat-pat on the back.

She gives kisses upon request, and sometimes initiates little puckery kissie-kissie motions.

And remember the Popeye Sighting?

It's no wonder I got confused about how I heard, or didn't hear, the "I love you" a year and a half ago or more. I've been hearing it a lot lately, listening with all my heart. It just hasn't been verbal.

Rhemashope didn't need to hear the words spoken either, but I'm surely rejoicing with her about what happened the other night at bedtime.

Someday. Someday.

Friday, April 17, 2009


Two Blocks

Four Blocks

Five Blocks

Six Blocks

Seven Blocks

Bristle-blocks work best (they stay together better) and it helps to stack on an alligator-toy that makes noises when pressure is applied. Joy does not crack a smile as she stacks these things. She's doing it under a certain amount of protest.

But she's DOING it. With very little help.

P.S. Night-time sleep has been pretty good lately too. (Did I just jinx it?)

Tuesday, April 14, 2009

Bad Form

I wonder how many trees had to die to create the forms that I'm supposed to fill out this month?

Forms, forms, and more forms!!!

The ones for Rose have been the big volume lately. We signed her up for a new summer-care program, so they needed umpty-something different forms filled out, from the emergency contacts to the vaccination dates to the contract to the field trip permission et cetera, und so weiter. I think I had to put all our names, address, phone and e-mail on every single form. Well, OK, maybe no e-mail on the form about the preferred brand of sunscreen and bug spray. Sure felt like it though.

Then there are the forms from the elementary school. Tell us about Rose so we can put her in a well-balanced class next year. Buy petunias to support the PTA. Scholastic Books order form. Sponsor sheet & t-shirt order form for the all-school walk/run in May.

And we signed her up for piano lessons again for next year. And I think there are a few more forms lurking in a pile that I'm forgetting about. If not, I'm sure some will come home in her backpack now that spring break is done.

Of course we can't let Joy get away without paperwork!! The contract for the daycare renewal at Lynda's is an easy one, I just haven't gotten to it yet. The one I'm actively avoiding at the moment, though, is the re-registration for medical assistance. Not that it's a particularly long form or anything. It's just... well, kind of a mess. It appears that they're trying to use the same ridiculous form to accommodate everyone from preschoolers with special needs to economically-disadvantaged applicants to people with work-related disabilities -- and for first-time applicants as well as renewals. Sure, THOSE are all going to need to answer the same questions. These government-program-forms give me the willies anyway. As confusing as they are, I have this icky fear that I'm going to accidentally mis-interpret something, give the "wrong" answer, and *POOF*!! Joy's future eligibility will go up in a puff of oily smoke, and I'll never figure out the proper incantation to bring it back.

Silly, I know. Right?

And all of this is just a warm-up for the Big Ugly later this spring, the annual re-certification or whatever the heck it's called, for medical assistance on the whole and the intensive autism program in particular. The one where I get to ponder and enumerate all of Joy's deficits, failings, shortcomings and abnormalities in excruciating detail, to prove that she's wretched enough to merit the help. (But simultaneously demonstrate that the program is doing enough good to be worth continuing.) Goody, goody.

It's just not right. Won't somebody please speak for the trees?

Monday, April 13, 2009

Is this how it feels?

I had an uncomfortable car ride home last night.

We'd had a lovely time with AuntieS and the JoyDad family, much good food and conversation and egg-hunting. Then we bundled the girls into their footie-jammies and our stuff into the car, and headed out to drive the couple-of-hours home.

I don't know whether it was the too-much-good-food, or the antihistamines I took 'cause I'm allergic to the pets at AuntieS' place, or the allergy reaction, or something else, but I could not get comfortable in the car.

It felt like my skin was too tight. It felt like I needed to stretch my legs, only the stretching I could do in the confines of the passenger seat didn't help. My leg muscles and knee joints felt "off". I needed regulation and couldn't find it! I wanted to get out of the car and run, or have someone hold my hands and "jump" me in the big soaring jumps that we do for Joy. I kept shifting and twitching, trying to find a comfortable position, probably annoying the heck outta JoyDad.

Joy, meanwhile, had slept on the earlier half of the trip, and was not about to sleep on the way home. She kept pushing my seatback with her feet, which irritated me beyond usual bounds.

And I had to wonder...

Is this maybe what it feels like for her ALL THE TIME?

Friday, April 10, 2009

Product Hits & Misses: Bubbly Edition

It's spring, it's spring!

We had a gorgeous day yesterday. And we started it out with a trip to Target to pick up a replacement for what has become (for us anyway) an indispensible toy. Behold today's first hit, the bubble machine:

More Bubbles?

Here's a photo from the web of how it looks in the packaging:
Amazing Bubble Generator, official image
Joy got the first of these bubble machines for her birthday at the start of last summer. This year it's called "Amazing Bubbles Bubble Generator"; last year's model was called "Turbo Bubbles Bubble Generator", and both are from a Chinese company called Placo. Cost us about $15 at Target; they only have them during the spring months and into the summer, as far as I can tell. You pour bubble solution into the front of the machine, and then it turns both on and off by means of a single colorful push-button on the top of the machine.

Joy LOVES to turn this thing on and off, and to run around in the resulting stream of bubbles. Yesterday she was actually tracking bubbles and working on popping them, another skill that seems to come and go. The first of the above photos is the one that we use in Joy's PECS book; a highly motivating choice.

Downsides of the toy: it eats lots of bubble solution (make sure you buy an extra gallon of the stuff) and also eats AA batteries of which it takes six. It also comes with a handle on top, but if you try to pick it up with the handle while there's bubble solution in the toy, it will tip and dump out all the solution. Oops. For a cheap plastic toy, it did pretty well, lasting a whole year. Eventually the fan fell off in the back of the machine and there's no way to open the thing up to get to it. Still. You'll notice we ran right out to replace it while the getting was good!

On the MISS side of the equation last year was another battery powered bubble generator called Bubble Bellies: Manely the Lion, by Little Tikes.

Manely The Lion
Poor Manely. He was a cute idea: you operated him by grabbing a handle on his back and squeezing, which opened his mouth for the bubbles to come out and turned on the fan. Should have been good grip-manipulation practice. But he was too heavy for Joy to turn on and carry around easily, and his handle tended to stick which made him frustrating even if you worked him on a table, and he broke within weeks. Plus he didn't give nearly as good bubbles as the Bubble Generator. Manely = Miss.

So, one more bonus hit before I go today. This one is from Rose.

Multicultural Skin Tone Washable Crayola Markers
I first saw these "Multicultural" washable markers from Crayola last fall at Target when I was school-supply shopping for Rose. I passed them over at the time since we were spending so much money already, thinking that I could pick them up as a stocking-stuffer later. But when I went back closer to Christmas, they were nowhere to be found, and I didn't know the right search term (multicultural) to find them online. Suddenly we found them in our local craft-supply store this week. Rose was delighted, and set right in to make a rainbow of people! Wish I'd had this kind of thing back when I was a kid; the standard colors never did justice to skin tones. Heck, I bet my mama wished they had washable markers at all back when I was a kid!

There's your product roundup for the day. JoyMama out.

Tuesday, April 7, 2009

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.


Saturday, April 4, 2009

Friday, April 3, 2009

Let's Jump! or, All Done?

In the wake of a couple of big Joy meetings recently (Agency 2 and also IEP), we've been upping the ante a little bit on her photo-communication. Some neat stuff to share.

First, we've added an "all-done" card into the mix. Her cards have all been photos so far, but this one is a Boardmaker image that has a line-drawing showing a person making the "all-done" sign.

Until now, we've been able to offer choices between two photos, but haven't given her a similar means of choosing/communicating that she's finished with a toy or activity. But now, let's say we're out on the deck with the trike. She's played with it a while, then gotten up. Now we can swoop in and ask the question: "More trike? Or, all done?"

Trike, or All Done?
Then if she picks "all done", we abandon the trike and set up another choice between two or three different options.

The other thing that we've been trying is a single-button communication device. The parent/barista/whomever records a word or phrase on the device. Then Joy "says" that word herself by pushing the button and activating the playback. She'd used it with some success at daycare for things like "more" at snacktime and "my turn" when the group played games (they'd pass the button around and have other kids say "my turn" in the same way).

New twist at home is using the photo cards to indicate what pressing the button will "say".

Switch button
So there's the button, with a velcro on it to hold a photo card.

I was worried that Joy would want only to pull the photo card off the button, since that's how she communicates with photo cards using the binder. And in fact, she did try that at first. However, she learned within maybe two days that when a photo was on the button, you pushed instead of pulling. Clever girl!

One of our favorite button-requests is "Let's jump!" Joy loves to grab an adult's hands and get them to help her jump to impossible heights. Lately she's even been putting little cheerleader kicks and splits into her jumps! If the button is programmed and available, though, we're nudging her to "ask" with the button.

I saw such a button used to very cool effect last year when Rose sang with the other kindergarten and first-grade classes at school. There were a coveted few speaking parts that had been doled out among the first-graders. One of the first-graders who "spoke" a part did so by means of a push-button switch! Powerful stuff.

Rose (who had one of the speaking parts in this year's concert) has gotten involved in programming the button too. It's lovely to hear Joy speak with her sister's voice.

More to say? Nah. All done!

Thursday, April 2, 2009

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!

String for blinds
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!!"

Wednesday, April 1, 2009

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?