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...

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.

Northwoods Adventures, May 2011

Here's the long-promised roundup of our Memorial Day at the lake.

Balloons for the birthday girl:

And for her big sister:

We walked in the woods:

And blew bubbles on the pier:

And played with the bubble-swords on the screen-porch (thank you AuntLO and UncleDO for the gift of bubbly entertainment!)

And enjoyed the heck out of pine-needles (so soft! so fragrant!):

We had unusually long stretches of independent play with the ring-stacker:

And lots of people-peek play with the pompom:

And the rocking chair:

Rose learned to cast with a borrowed fishing rod:

And caught a 20-inch northern pike off the end of the pier! (Actually, Rose hooked it, JoyDad landed it, and GrampaK de-hooked and released it. Rose was not interested in even get near enough to "her" fish to be photographed with it.)

Very tame, so far. Minor adventures only. Nothing nearly so eventful as last year...

Until we set out for home.

We'd decided to try & save some time by going out the "back way," down a remote logging road that had recently been widened a little by a new logging operation. We actually drove out to town that way on Monday, so we knew the road was passable (if a little muddy & exciting to drive.) We and GrampaK were the last ones out on Tuesday -- he went one way, we went the other.

And before we'd gotten more than a couple miles out, we zigged where we shoulda zagged -- and the passenger wheels sunk deep into soft mud at the side of the road.

"Everybody out," declared JoyDad, after the first attempt at backing up went nowhere.

I swung my door open... and it barely cleared the mud.

So we all clambered out the driver's side doors, and I spent the next 10 minutes holding Joy and getting bitten by mosquitoes while JoyDad got muddier and muddier trying to dig out (without tools) or toss something under the wheels for traction (a losing battle.)

Finally we decided that someone needed to hike out. Probably about 3 hours walk to the nearest house. We only had the one cell phone (mine) and of course no reception back-of-the-beyond as we were.

So the mud-spattered JoyDad set off down the road, glancing down at my cell for "bars" about every ten steps. I piled back into the car in the mud with the girls, out of mosquito range, to settle in to try & entertain them for who-knew-how-long. With no means of outside communication whatsoever.

Rose and Joy were two different entertainment challenges. Rose was aware enough of the situation to have some imaginative worries, and kept asking when Daddy was coming back. (As if I knew. He'd set out at 8:45. In my mind, the earliest he could possibly return with help would be 11am, and that was terrrrribly optimistic. But I didn't name a time.)

We snacked. I read chapter after chapter from Little Women. Joy watched DVD -- how long would the battery last? The sun started streaming through the trees onto the car, but I didn't dare run the air for more than 5 minutes every half hour, for fear of killing the battery too...

And then, just at 11:00, a tow-truck appeared through the leaves.

I didn't remember to get out with the camera to record the sunken car, but here's how it looked just after rescue:

We had guardian angels watching over us that day. JoyDad got a shoulder-tap from the first one about 15 minutes into his hike. He was watching that phone for the non-existent "bars" when all of a sudden... it RANG! Still no bars visible, but just enough connectivity that it was able to let him know that there was a message waiting.

That message was from the angel -- because I almost NEVER use my cell unless I'm setting up a specific call. Very few people have the number, and even fewer use it unless we've set up to speak. And yet, someone from home-town had called, just about the time we were getting stuck.

If JoyDad hadn't gotten that voice-mail alert, he'd never have known about the patch of connectivity back there in the woods. As it was, he was able to call 911 and be connected to a towing-company dispatcher and get help on the way.

And then he walked out of the connectivity and didn't hit another patch before finally intercepting the tow-truck, about two hours after his hike began.

Second angel was a mechanic in Merrill, Wisconsin, who was able to take a look at our vehicle when it started making awful noise en-route, and (instead of taking us for a huge sum of cash in our distress) assured us that we'd make it home as long as we didn't accelerate into any sharp turns.

I'll spare you the account of the rest of the trip -- it was long and warm and kinda cranky -- but we made it. And even the total expense, between the tow and the next day's necessary repairs, weren't nearly as awful as they could have been.

Wonder how next year's trip will go (she says with fear and trembling!)

Break!

There's some wonderful stuff going on with Joy, beyond the birthday party and swimming I talked about in the last post.

I haven't yet told you about the birthday card she decorated for her classmate. Poor Joy has not had a happy relationship with writing-utensils over the years. We keep trying to get her to make marks on paper, and she would rather do anything else -- crumpling the paper ranks much higher on her preference list than drawing on it. Even so, I've made her "sign" every card that's gone out under her name or from the family, usually a hand-over-hand mark made under protest.

But they've been working at school with drawing-on-paper. And look what she produced when I put marker in hand and held down the birthday card for her to "sign":

All I did was hold the paper down. She did the spirals herself, no hand-over-hand involved except to help get the marker-cap back on.

But wait, there's more.

In our computer-bookmarks for years has been a fun baby-game site called Kneebouncers. The games are super-easy and work by just clicking on the screen or hitting any key. Unfortunately they recently went to a paid-subscription model, but there are still a couple of freebies, and we made a great breakthrough with one of those this weekend. The game is called Peek-a-bouncer, and to make it work, you have to click-and-hold (or push any key and hold). Then the curtains slide open and you see a funny face and a voice intones "peek-a-boo!"

Joy always tended to get frustrated with this game, because with the other games, all she had to do was a quick click to make things happen. In Peek-a-bouncer, if you just quick-click, the curtains barely budge and the voice gets cut off.

But on Sunday, after much hand-over-hand play, where I'd help her hold the mouse-button and I'd say the words "push-and-hold!" in the same tone as the "peek-a-boo!" -- she actually began to push-and-hold on her own. Experimenting with how much hold it took to create how much effect.

Oh, my goodness.

And then!

Last night Joy's newest barista (autism line-therapist) got Joy to turn a difficult evening around quite dramatically. Joy had been having a rough time, didn't want to be in any of our standard rooms, the barista was trying all the favorite stuff to no avail. They were working in Joy's bedroom when the barista as a last-ditch effort thought to ask her: "Break?" And Joy understood immediately, and dived on her own into her bed-tent, where she immediately set to work on putting herself back together. Over the course of 5 minutes in the tent, Joy stimmed herself from angrily-overwrought into pleasant-mood. The rest of the session then took place in pleasant-mood mode.

This is something we're going to USE. Again: Oh, my goodness.

[Bet you thought from the title of this post that JoyMama was going to be taking a bloggy break. Heh. Not a chance. You're stuck with me.]

Squeezing the Balloon

Some aspects of life with Joy lately have felt rather like what happens when you squeeze a balloon. If you put your hands around the most bulging part of the balloon and squeeze, the air will move over and make another part of the balloon bulge instead...

Or that classic bedbug baby-toy, where there are four bedbugs and two are always "up." Hit one with the little plastic hammer, and it pops down but another pops up.


Take, for example, Joy's stims. She's not pulling down Christmas cards or plants (yay!) But she is getting so insistent on snow-stimming that it's harder and harder to make even a short walk between car and school, even if the sidewalks are clear -- she dives and kicks into the snowbanks on either side, and then goes limp when you try to get her to stand and walk. And she's getting terribly insistent on "making friends with the pillow" if left to her own devices for any length of time at all. That lovely fleece boa I made her for Christmas, that I was hoping would be a socially-acceptable twiddle-stim? She lo-o-o-o-o-oves that boa, and not in a way we can take out in public. And if we take the boa away, the house is full of usable substitutes.

Then there's the "acts of ow." She's hardly pulling out her own hair any more, and the self-injurious stuff has dropped to near zero (yay!) But guess what has gone way up instead? Outbursts directed at other people. Hitting, kicking, hair-pulling, as a very touchy and very immediate frustration response.

I don't like the balloon/bedbug-toy analogy nearly as well as I like comparing Joy's development and behavior to a mixer board (with sliders that go both up and down but don't necessarily have to be zero-sum.)

I'm pretty sure that the stimming does have to happen in one form or another, though I wish we would be able to have more influence as far as what the range of preferred stim would be. [Update: TherExtras reminds me to link to our joint-post from a year ago, Stim-Sense, that explored stimming issues.] Even more so, I wish the acts-of-ow weren't acting like a squeezed balloon. Because as far as I'm concerned, I'd rather have that acts-of-ow-balloon just pop and disappear altogether.

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 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.


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!

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.

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!

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.

Stim-Sense

This post is a cross-pollination between Barbara at TherExtras and JoyMama at Elvis Sightings –- co-authored by two bloggers who have never met in person, but hope one day they will.

When we move ourselves our bodies are wired to feel that movement. We humans have beautifully intricate wiring (nerves) connecting feeling (sensory) with movement (motor).

Some movement feels good. And with that basic understanding, seeing children who repetitively moved in (sometimes unusual) ways, charter psychologists called this behavior self-stimulation. Early in Barbara’s career, therapists commonly shortened this to self-stim. Currently, parents like JoyMama and others who encounter or engage in self-stim have learned to call these behaviors ‘stimming’.

Stimming is part of the DSM definition of autism, though the definition does not use the word, perhaps because it is not technically-defined, nor even in the dictionary. "Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)." However, one can receive an autism diagnosis without meeting this particular criterion -- and stimming is associated with other conditions as well. Not everyone who stims has autism.

Repetitive movement is important for learning -- a mantra of Barbara’s if you read her blog regularly. But stimming does not fit the "important for learning" category in the same way, and can actually impede learning. Most educational/therapeutic references to stimming are made with negative overtones.

Stimming is sometimes described in words like these: unproductive, obsessive, obstructive, annoying, consuming. These perceptions of stimming are common among people who are observing it, such as parents, educators, bystanders.

In the autism community, some think that since stimming is part of the autism definition, reducing the stimming amounts to a reduction in the autism. Applied Behavior Analysis (ABA), an educational technique intended to reduce autistic behavior, is associated with that approach.

But another list of descriptors implies a different perspective on stimming: pleasurable, centering, meditative, regulating, communing. You are more likely to hear these from people who engage in stimming themselves.

Within this second perspective stimming is viewed as similar to what neurotypical individuals do to calm or entertain themselves: thumb-twiddling, pencil-tapping, leg-jiggling, even knitting. Stimming as regulating activity is seen as beneficial for helping people "keep it together," allowing them to block out negative or frightening input and keep from feeling overwhelmed.

One particularly thought-provoking insider-view comes from Amanda Baggs, an autistic self-advocate. In the first few minutes of the video "In My Language" below, she shares some of her "stereotyped and repetitive motor mannerisms," as the DSM would say. The latter part of the video gives Amanda's own translation of the meaning of her movements, using a voice synthesizer (Amanda's means of speech).



Families of children with autism struggle to find a balance between stimming and education. How does stimming interface or interfere with learning?

Does the behavior stand in the way of beneficial play? Learning is the work of childhood. And stimming can indeed impede learning when it consumes the play-time and energy, or turns educational objects into stim-objects.

JoyMama and Barbara offer the following ideas... in two categories. (This is a brief listing. To find out more, ask the professionals who work with your child.)

Reducing or preventing stimming

1. regular (daily is best) ‘heavy work’ or strenuous activity/exercise
   
2. consultation with a psychiatrist to rule-out or treat co-morbid mental illness
   
3. consultation with a neurologist to rule-out or treat co-morbid seizures
   
4. structured lifestyle
   
5. discovering and avoiding an individual's triggers for stimming (for example, Joy stims on ribbons and strings. Her family sometimes "disappears" such objects when the focus needs to be elsewhere).

Using stimming to benefit the person or enhance their life

1. stimming as reward-breaks between learning activities
   
2. allowing some stim that can be done simultaneously with learning activity - maybe chewing a tube can help your child focus on a book or drawing
   
3. use stimming during learning-play -- place a stimmy-toy into a tunnel to crawl & retrieve, take turns with tossing/catching a stimmy-object
   
4. enter into the stimming-world together -- letting gravel run between your fingers and toes feels good!

Therapists have a saying that if you take away one stimming preference, another will develop in its place. Complete elimination of a stimming habit might be unrealistic, and not even desirable, depending on what function the stimming serves. Stimming-related goals, like all goals, are best seen in the context of the whole child.

Re-evaluate on a regular basis whether you are satisfied with the progress of your child or the effectiveness of the therapeutic and educational methods being used.

Update September 2010: There's an excellent insider-perspective post at Reports from a Resident Alien about stimming and its purposes and the sensory channels it affects.

Would you share approaches you have used to prevent or incorporate stimming in the life of your child?

Initiative and Planning.

Going to the park with Joy is a mixed bag these days. On the one hand, she's mighty stimmy on the gravel or woodchips or whatever. Handfuls go flying into the air at random times (one of those less-than-a-good-example kinds of things when other kids are around), or into the mouth. Bleah.

On the other hand, she is doing great things on the play structures. The other day I had her at the school playground, on equipment that had three different kinds of ladders (petal-grid, spiral, ordinary). It was such a treat to watch her think and plan as she made her way up the petal-grid and the spiral! The wheels were turning and she was making the most of it.

Then she saw the big-kid swings, way down the hill and across the grass.

WHOOSH. She was on her way.


When I caught up with her, she was trying to get into a swing. These are higher up than our usual park, though, and she couldn't quite make it. So she came over to me, grabbed my hands, put them under her arms. Pick me up, Mama. Put me in the swing. I was so happy to help!


Joy has done so well lately staying in the swing and holding on for high pushes, and not trying to get off until the swing is nearly stopped. So I gave her the big-kid treatment, with the great big running-underneath pushes (do you call those underducks? or underdogs?) Anyway. She grinned so big I thought her face was gonna split in two.

Meanwhile, Rose was clamoring for the big pushes too. I think they picked swings at the opposite end of the set on purpose to give Mama a workout...


Joy's use of the hand-pulling request has blossomed lately. To the buckles on her booster chair (unbuckle me, Mama, I want to get down!) To the TV/video-player (Baby Einstein, please, Mama!) To the door handle (play outside? Now?) To her own underarms (I'm tired of walking, pick me up!)

The flip side here is that when I have to refuse (sorry sweetie, we can't start a video, the therapist is coming in five minutes!) she is declaring her unhappiness in no uncertain terms. The fuss can persist long after the initial offense. I should be celebrating this, I guess, right? As in, it's not normal for a kid to give up so quickly and nonchalantly as she's generally done in the past. Oh bliss, oh Joy, she's discovered her inner two year old! Hurray, and a big deep sigh.

One final vignette for this post.

Yesterday afternoon Joy was hanging out in the living room, watching a video (yes, Baby Einstein, what else?) and I was lounging on the couch with a book. Suddenly she went over to the quilt that stays in the room, that her baristas use for blanket-pulls and swinging and such. Her 6-ft-7 barista-dude has been trying to teach her to help spread the quilt out a little bit -- he's the only one that can give her the full swinging treatment all by himself! Well, she took the quilt and made spreading motions and got it laid out a little bit on the floor. Then she came over, took my hand, pulled me from the couch. And then she sat down on that blanket.

Look Mama, I've done the planning & prep work. Swing me now!!

I called JoyDad over, and together we swung her high, to the accompaniment of that dazzling grin.

Patterns at the Park

I had a fine evening at the park with Joy and Rose the other day. It had been a couple of weeks since the elements converged such that we could all go -- weather and absence of prior commitments on all sides. It was a different experience than the last trip!

Difference #1 - Rose rode her bike. Like, on the way there! When we went to the park to learn to ride, we loaded up the bike into the car and drove to the park. Now she can ride almost the whole way, and only has to walk her bike on one especially steep hill.

Difference #2 - Joy didn't dash. Last time we went, she wandered afield, and I had a big long run at one point, ending with a dramatic swoop whereby I caught her by the coat just as she was about to jump into the water in the ditch! This time, she spent the entire time in the gravel area.

Difference #3 - The gravel area didn't enter Joy's mouth. Last time, particularly near the end of our stay, I felt like I was digging gravel out of her mouth every time I turned around. This time? Not at all.

She did spend lots of time gravel-stimming, which felt very familiar. One new thing was shuffling her feet through the gravel on her way to the swings or play structure. I'm reminded of how last year she started the spring season being extremely stimmy at the park, not wanting to do anything else. Then over the course of the park season, she got gradually more interested in things other than the stimmies. Wondering if we're already seeing that pattern repeat.

Difference #4 - Joy wanted to play on both the big kid swings and the toddler swing. Last time she only wanted the toddler swing, though I tried to interest her in the big-kid swing, the kind with the flexible seat between two chains. She was having none of it, deliberately sliding off even before I could get her swinging. This time she gravitated toward the big-kid swing herself, got into position to hike herself up to sit on it, and then looked at me for help and signed "more" when she didn't quite make it! She went back to the swings several times, sometimes requesting "more" for my help, sometimes draping herself over the swing on her tummy and propelling herself. She even at one point tried to do the tummy-drape thing on the toddler swing, which didn't work quite so well. I liked seeing the experimenting, though. And the signing -- how glorious to see the signing.

Well, Rose would probably tell me (since they worked hard on defining patterns in kindergarten) that you can't call it a pattern until/unless it starts repeating. We shall see. Whatever else it was, though, it was a lovely evening at the park.

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?

Knows What She Wants, Knows How to Get It

Joy had a stimmy, scattered House Blend therapy session while I was at handbells last night.

Even with a chewy-tube clipped onto her dress, she was still perseverating on stimmy toys to the extent that the barista was having a hard time getting through. The stimmy of choice was a My Little Pony, who was gettin' her pink mane intensely chewed upon.

The barista eventually hid the pony away.

Joy proceeded to go find the pony-photo in the photo binder, yank it off its velcro, and hand it over emphatically.



She got her pony back. Wish I'd been there to see it.

Joyful Autism

The inimitable Barbara at Therextras pointed me in the direction of a new (to me) blog last week, and I've been mulling over one of the posts I read there. The blog is Both Hands and a Flashlight, the blogger is Tim (who co-blogs with his wife Mary, sound like a familiar set-up?) and the post is "Happy Autism"?

Here's how it starts:

I recently ran across the term ‘happy autism’ in a book I was reading (which, of course, I’ve now forgotten the title of). Essentially, the author used this term to describe his autistic child, who clearly 1) met all three components of the so-called ‘autism triad’, and 2) was generally very happy and content most of the time.

That immediately rang a bell with me, and I do love bell-ringing! Joy doesn't generally fit the prevailing child-with-autism stereotype, an image that perhaps entails a blank-faced, unresponsive kiddo either rocking silently in a corner or engaging in disruptive, self-injurious behavior. Not that she doesn't get wrapped up in her stimmy activities, and we've had some effort to keep her safe from herself too at times! However, on the whole, she's a sunny child with an irresistable laugh, and we end up having to explain the shortcomings of the stereotype to people who wonder why she has the diagnosis she does.

There's actually something dangerously seductive about the term "happy autism" for me, as sweetly as it seems to fit my daughter. The trouble is the wish to find a way to differentiate her from those other kids with autism. You know, the stereotypical ones. See, she's not like them. She's happy. She's in a different part of the hierarchy, y'know?

Ugh.

Tim points to other modifiers that do something similar (high-functioning, mild, moderate, severe), even though they're not part of the official diagnostic criteria.

In our informal search to categorize and quantify, we end up creating new boxes, new artificial separations, each of which can bring its own damaging value-judgments.

I know that we need language in which to talk about diagnoses and conditions and experiences. I don't envy the team that's working on the new definition of autism for the upcoming edition of the Diagnostic & Statistical Manual (DSM V). The new definition will surely draw the formal boxes in a different manner than they are formally drawn now. I hope that they will get closer to getting it right. If we knew what right was.

Meanwhile, we're back to the tension between the myth of fingerprints (they're all the same!) and the n of 1 (every last one is unique). So I've got a new term for my original, broke-the-mold kiddo. It's all hers, uses her name even!

"Joy"ful autism.

(Seriously, if you haven't done so yet, go read Tim's post. He's good.)

Elvis Says "No!"

Interesting language use this week with Joy.

We are still not really hearing words on a consistent basis, though there's been a fair amount of vocalizing. Our "Popeye Sighting" (when she used the word "ug-ug-ug" for "hug" a while back) has remained in the Elvis Sighting category -- I've only heard it once since. There are a few other words that come and go:

-- "gog-gog-gog" for doggie
-- "chuh" for chair (her mealtime booster-seat)
-- a few sounds from the farm See-n-Say, her current favorite toy
-- one blessed Elvis-Sighting string of "ma-ma-ma"

The most interesting recent Elvis Sighting to me, though, is her use of the word "no." She's been doing some deliberate "nuh-nuh-nuh" to mean no, but there have also been just a couple very clear, distinct, definitive "NO" utterances.

Here's the interesting bit -- unless I'm mistaken, they've all been said to just one of her 5 intensive-autism therapists (who reads this blog faithfully, so, hi!) Not to me, or her sister, or Lynda at daycare, or JoyDad, or her school district therapists. The context tends to be when this particular therapist asks Joy to give her something that she doesn't want to give. Joy has, on just a few occasions, pulled the item away and said no, clear as a bell.

Fascinating!

She's also been responding better to "no" or "stop" from adults in a certain stimming situation she's been very persistent about. Which would be... umm, how to say this... oh well... humping. Pillows, stuffed animals, her blankets. She can get very... intense about it. Such a little sensory-seeker, our girl! It's not exactly that it's a problem, but it's the primary activity that keeps her awake when she oughtta be sleeping, and also pulls her into her own little world when she could be doing more useful, or interactive, or socially-acceptable things. So when she's not alone in her crib, we've been working on getting her to replace it with other activities.

It reminds us a little bit of another sensory activity that she was once very persistent with, which involved playing balance-beam with our low picture-window frame in the living room. There's just enough of a ledge, about a foot off the ground, for her to teeter on... and she went through a long phase of absolutely loving to teeter. Unfortunately she often teetered too far, and picked up lots of sad little bumps and bruises!

JoyDad's been the leader in these situations. I'm too much a softie, tending to think along the lines of "well, if that's the input she needs, I hate to get in the way." But JoyDad doesn't give up so easily. And, with repeated gentle admonitions (together with physical redirecting if need be), he eventually gets Joy to respond to a "No" or "Stop" voice-prompt. It eventually worked on the ledge-teetering issue -- I'm sure that he's the main reason the dimmer switch eventually slid to "off" and she stopped doing it altogether. With the "Joy loves her stuffed animals" situation, she is now willing to stop on voice-prompt. First she only accepted it from him, now she'll respond to the "no" from me (and I think from Lynda too) in that situation as well.

Yay, JoyDad!

Zombie Parents

JoyDad and I are going to be zombies again today.

No, we aren't seeking braaaaaains. (Well, OK, maybe we need those too.)

Our desperate zombie-moan sounds more like "SLEEEEEEEEEP!"

I referred to sleep-deprivation playing a role in the run-up to Women's Retreat this past weekend.

Here's the deal. Over the past couple of weeks, Joy has been fighting going to sleep. The way she does it is through stimming, both physically and vocally. Loud vocals. Hoots and yelps and giggles. Did I mention LOUD?

It started with just naptime, which is not that surprising because lots of 4-year-olds are ready to give up naps. But then it transferred to bedtime in the evening too, and also to wake-ups in the wee small hours. She can keep it up for hours on end. And when she's doing that loud vocal stimmy stuff, her parents don't sleep.

We have been able to manage the bedtimes using melatonin. Unfortunately, that doesn't seem to affect the 2:30 or 3:00 am wakings. We just asked her doctor for the OK to bump up the dose Monday night, and she did sleep through Monday night. Last night, though, she started up at 3:30am. Of course we'd been up to see the election returns and the acceptance speech... I got up, gave her some Benadryl, rocked her till 4am, then put her back in the crib still awake. I think she might have dozed a bit, but then started in again.

Therefore, JoyDad and I have basically been up since 3:30am. Again. With headaches, and fighting our colds.

At least Rose sleeps through it all, though I have no idea how, because they share a room!

My hunch is that this will eventually be like the whole biting thing, and the dimmer switch will eventually slide back the other direction.

Till then, though, this is taking a pretty big toll.

Ideas welcome! Thank you in advance for any input...

And in regards to the events that kept us up watching the TV, I'd like to close with a line from a pre-election prayer that came around by e-mail, from the Mennonite Church USA Peace and Justice Support Network.

We pray that all candidates, both those who are elected and those who are not, will seek Your justice and Your peace in the world.

Peace.