Thursday, December 31, 2009

God Sightings

Wonder stops us in our tracks. It compels us to let go of focusing on dogged accomplishing and doing, and instead to simply be open and vulnerable to the mysteriously wonderful presence that is God-With-Us.

The above quote was part of an e-mail message that stopped me in my tracks on November 22, a week before Advent. The message came across the church mailing list from our pastor, inviting us to prepare our hearts for Advent, and introducing the season's worship theme: Seized By Wonder!

The message included specific statements of invitation for each of the weeks of Advent, and said, "If one of these statements of invitation reminds you of a story or some thoughts you'd like to share with the congregation, please contact a member of the committee..."

The statement of invitation for November 29 was "Share the ways you see God here and now." November 29. One week away. Sunday after Thanksgiving, a weekend of travel. End-of-semester crunch. Surely that message wasn't for me.

But it was.

I found myself in worship-committee conversations, and writing a reflection (which pretty much wrote itself) on the bus to work and in the car on the way to Thanksgiving celebrations.

It was a strange paradox, that being open to being stopped in my tracks, and releasing the load of accomplishing & doing, entailed taking on one more accomplishing/doing task. Yet who am I to argue with the Spirit? Besides, I had been preparing for that reflection for over a year. By writing this blog.

Elvis Sightings = breakthrough moments of wonder.

I know I've got the Grinker coinage of the term Elvis Sightings up on the sidebar: a one-time utterance or action that comes surprisingly out of nowhere, and then disappears again. It's a fascinating aspect of our experience with Joy and her autism. However, the chronicles here at Elvis Sightings have by no means been confined to that narrow a definition. Instead, I've been writing about moments worth sharing. Happenings that make me think. And above all, the sightings of wonder that -- even when I don't make the explicit connection in the blog post -- make me aware of God's presence in our lives, here and now.

Some recent examples:

Seized by wonder! God is here.

Breakthrough moments of wonder = God sightings.

It was a privilege to share some of these reflections with the congregation.

My wish for you this new year -- and maybe it can count as a resolution for myself -- is that we pay attention to the moments of wonder in our lives, taking a few additional moments of contemplation and gratitude.

May your "sightings" in 2010 be frequent and marvellous!

Friday, December 25, 2009


JoyDad got Chicago-Bears gear (it was available at massive discount this year!)

Rose got a Barbie and an Only Hearts doll (the one named Lily Rose).

JoyMama got a hot bath and a nap (Christmas BLISS.)

And Joy got squishy-face.

She pulls your hand toward her face, asking wordlessly for pressure across her forehead or cheekbones. Then when the squishy-face has been given, a great big grin erupts. And she signs "more" or pulls your hand again.

Not that she didn't like the presents. This year, she tolerated quite nicely being asked to tear the wrapping paper, again and again.

She's enjoying the jack-in-the-box, and the light-up ring-stacker, both of which she's been playing with functionally on and off through the day. Even more so, though, she has enjoyed a particularly long & shiny ribbon... and a piece of bubble wrap... and the lid to a package of greeting cards. And squishy-face.

We are all joyful here today, in our own ways.

May joy be yours as well. Merry Christmas!

Tuesday, December 22, 2009

Practicing Christmas

It started out with Rose and a gingerbread house from a kit. This is the third year we've done any such thing. The first year, we bought a house in pieces-parts. Took a while to get it properly constructed, and then Rose wanted it to perfectly match the picture in the instructions. Which meant that mama did all the icing, and Rose would put on the candies.

Second year, we got smart and bought a pre-constructed house kit. Rose actually started piping some of the icing herself, on the less-challenging bits.

This year, she designed and piped the whole thing (except for the door which she asked me to do).

Well, there was quite a bit of icing left, which got me thinking. What if I made a smaller house with graham crackers so Joy could do some decorating?

Joy wasn't thrilled with the sit-down work, but did a pretty good job of poking some M&Ms at the icing blobs. Letting go of the candy was a tough part. But she didn't much seem to mind letting the candies become part of the house, as long as she got to eat a few!

Then today -- since einmal ist keinmal -- we did another one. Rose did the icing blobs...

and Joy poked on the candies again, with some guidance.

I was delighted at how Joy seemed to realize this time that she needed to let the candy go so it would stick!

Then, for a bit more Christmas practice, I set her up to help me stir the peppernut dough:

I think we've got some good Christmas practices going here.

Friday, December 18, 2009

Artifact from Another Era, Take 2

I mentioned a few posts ago that we had visited my mother's mother, my magnificent 100 year old grandmother, at Thanksgiving. It was an end-of-an-era kind of occasion, in that we helped with the packing to move from the retirement apartment, where she'd lived with my late grandfather for more than half my life, into a smaller assisted-living apartment.

Of course, when you make a move like that, there's lots of downsizing to be done. We helped with that too, sorting things to give away, things to discard, things to keep. In addition to the books and family photos that I knew were going to be coming home with us, we also provided a home for various keepsakes, usable kitchenware (we've already made jello from her cupboard in her casserole dish!) and other odds and ends.

Grandma has always been good at saving pretty paper things to use in making Valentines and decorations. We brought home several packets of long-saved paper doilies for art-projects at our place.

It wasn't until we got home that I got a peek at the back of one of those doily-packets. These weren't just ANY old paper doilies, let me tell you. No, these were Roylies. And they have astonishing super powers...

Roylie's Doilies win his heart
Here's the text, if you don't want to burn out your eyes looking too closely at the image on the screen:
Nothing wins a man more than feminine fastidiousness! Famous movie actors, writers, artists, bankers and bon vivants have oft said when interviewed that good grooming in a woman is far more important than good looks. And the pampered male is quite as particular about fastidiousness in his lady's habits as in her habit!

Next time your best beau (or your husband's boss, for that matter) comes to dinner, let lovely Roylies enhance your feminine graces. Slip a dainty Roylie under the cocktail glass or tomato bisque. Frame that layer cake you baked specially for the occasion in a large round Roylie. It will look twice as beautiful!

The most inaccessible bachelor in town is bound to melt under the appealing influence of feminine daintiness done in the Roylie manner. Roylies are such a help in so many ways, there's no reason why they shouldn't help you get your man!

Hey JoyDad? Sorry I didn't have the Roylies thing going on when we met. But you married me anyway. Next time your boss comes to dinner, though, and I've got my eye to climb the social ladder, I'll see how well these work... oh, right, she's female. Never mind.

Wednesday, December 16, 2009

Artifact from Another Era

The semester ended. And I looked around the house, rather shocked at what I saw. Oh, the piles of "stuff"! And the dust-bunnies!

And, we're hosting our fellowship-group from church for a potluck on Saturday!

So I started to dig out, and organize the piles and bags and boxes that have somehow accumulated all over the place. One bag that I dug into to organize was Joy's little bunny-backpack, which serves as a diaper bag.

At the bottom of the bag, I found an artifact from another era. It was a syringe of emergency medication, for use in case of a seizure that lasted emergency-long.

We never came close to an occasion to use it, and the seizures eventually faded, and we go entire days (weeks?) without thinking of them. It was time to move the medication -- still well within its "good till" date -- into the medicine cabinet and not carry it around everywhere.

Those days may yet return. For now, though, it feels really good to take that medicine out of the diaper bag. The less unnecessary stuff, the better.

P.S. I think I'll tackle the piles of paper on the desk tomorrow. And clean the bathrooms. Wish me luck.

Saturday, December 12, 2009

Generation Gap

JoyDad and I had the privilege of attending Rose's 2nd/3rd grade music program at her school yesterday morning. The music teacher had built the program on the theme of "Mexico," connected to a social studies unit they'd all just finished. The entire show was bi-lingual, giving the Spanish-speakers a chance to shine and the English-speakers an exciting learning challenge. They even had a seasonal touch, a song from the tradition of "Las Posadas" which re-enacts the procession of Mary and Joseph from door to door in Bethlehem until they finally find shelter and welcome. It was very well done, and of course the sight of my first-born up there singing and moving so enthusiastically brought tears to my eyes!

After the program, I got a chance to visit Rose's classroom, something I've not been able to do this fall during school hours with all my LEND overload.

She'd talked several times about a certain little fellow whom we'll call "R" who sits near her and is apparently "in love" with her. When she speaks of him, I've thought I hear a sense of being flattered, but mostly buried under words of annoyance. Was looking forward to meeting the kid, and prepared to be kinda charmed -- puppy-love and all that, so cute!

And in her classroom I did meet R, and he is indeed a cutie, bright eyes and big smile and full of energy.

Then he spoke to me.

"Hey, are you Rose's grandma?"


Rose, sweetie? Feel free to be annoyed. I won't discourage you in that stance, not one little bit!

Wednesday, December 9, 2009

Snow Day

Eighteen inches of snow, ladies and gentlemen!

The schools closed down. The university closed down. State government closed down. Buses stopped running.

It's a thing of shivery beauty.

Joy approves.

She started out at the edge of the sidewalk where the snow was thin...

But soon began to blaze a wobbly trail for herself, all through the front yard.

When she had thoroughly explored the front yard, she headed around the corner:

After visiting our neighbor-granny at her kitchen door, Joy trailed along our backyard fence (look at that heavy-work!):

Finding that she couldn't get into our backyard because the fence was snowed shut, Joy plowed through neighbor-granny's backyard to her deck. Finding the deck-steps to be a solid hill of snow, Joy attempted one step... and then turned to me and ASKED FOR HELP!! (OK, so she used the "more" sign. It was still a huge, novel help request!)

So I boosted her up the steps, we went out the driveway and down the street...

and continued onward in our winter wonderland.

P.S. Rose is out sledding right now at a neighbor's. We'd left Joy at home to take an early-afternoon rest... but the neighbor's son was asking to play with her after his nap! So we'll be back out into the snow soon.

Tuesday, December 8, 2009

Christmas Comes but Once a Year

Home then to the laden table;
Ham and goose and pints of beer,
Whisky handed 'round in tumblers,
Christmas comes but once a year!
       -- Christmas in Carrick

Einmal ist keinmal.
What happens but once might as well not have happened at all.
       -- German saying, quoted in
The Unbearable Lightness of Being

We decorated our Christmas tree last week, at Rose's insistence. Our older daughter has been the nudge for quite a bit of the Christmas preparation that we've done so far, including a gingerbread house (from a kit) that she decorated almost entirely by herself.

I wrote about Joy and our tree last time the holiday rolled around. We trimmed our little fake tree without her assistance in 2008. My reasoning for doing it that way: I was afraid that she would be confused by being first allowed to touch and decorate the tree, and then having it be off limits for the rest of the season. We were not at a point last year where she could be trusted not to stim on the branches, or grab the ornaments, or knock the thing over altogether -- though I did have hopes for Christmas 2009! So the tree went up on the stereo cabinet, substantially out of reach, trimmed with non-shatter ornaments just in case.

Well, here we are approaching Christmas 2009. And Joy is just as perseverative when it comes to ribbons and stringy-things (though not her hair right now, thank goodness!) and perhaps even more mischievous about deliberately getting into things she knows are "no."

So the tree is up high again, once more decorated with non-hazardous trimmings.

Christmas Tree 2009
This year I felt differently about Joy's participation, though. It's not fair to shut her out from this activity that Rose enjoys so much, and that is such a holiday tradition... surely there could be a way to modify the activity such that it could be at least somewhat successful for her, and not too confusing?

Rose and I unpacked the little tree in my bedroom, put on the lights (colored ones this year), and hauled out the ornaments. I enlisted her help in choosing six ornaments for her sister to do. They had to be not too heavy, with big enough loops on the holders to be not too challenging to put on -- and the ornaments couldn't be too stimmy-stringy themselves.

We found six that fit the bill, and then carried the tree out to the living room, where Joy (supported by her barista) helped put on those six ornaments. She wasn't in a great mood and didn't really "get" it, I think. But she at least cooperated. And then the tree went back into the bedroom with me & Rose, and we trimmed it all up the rest of the way, and then carried it directly to its display perch on the stereo cabinet. Joy is tall enough to reach the lower branches now, a bit of a concern. I've only caught her in one stealthy reach for the tree, though, and all it took was me saying her name in the "stern voice" to get her to back away.

One iteration of putting on a few ornaments.

When other than on holidays do we ask of Joy that she learn things in ONE annual iteration?

At Halloween, for example, her WonderWoman daycare lady Lynda does a great job of setting up a trick-or-treat practice at the daycare. But it, too, is a one-time shot, and some years it falls on a day we're not there. So Joy gets maybe one practice, then one shot going out to knock on doors and beg for candy in costume. And then it's a whole year before we require it of her again.

Talk about confusing!

Easter baskets? Once a year.

Birthday presents? Once a year.

Trimming the tree? Once a year.

Yet, how does Joy learn routines? Repetition, repetition, repetition.

She's gotten very good at getting into and out of her seat in the car, and helping to close the car door. We do that daily.

She has learned to use fork and spoon, and is making progress at drinking from an open cup. Meals come three times a day, with two snacks.

She is learning to turn noisy-toys on so that she can use them. We enabled this with a full-court press, communicating to her entire school team and autism-therapy team that toy-turning-on was a priority. It didn't take her long under those conditions to get the hang of it.

Einmal ist keinmal. If you're only going to do something once with Joy, perhaps you almost may as well not bother. One iteration is not enough to stick.

It's been different with Rose, of course. We've seen a steady progression from one year to the next of these once-annual rituals. At Thanksgiving she's gone from stirring the pumpkin pie filling, to dumping in the measured ingredients, to learning to crack eggs, to (this year) actually learning to crimp the edges of the homemade crust!

On the other hand, Rose hasn't learned it all in one shot either. It does take at least the annual repetition.

For Joy, maybe we need to think about it as a different timeline, a different number of repeats.

Of course, I don't really believe that einmal ist keinmal in a philosophical sense. Just look at what we're about to celebrate, the singular, holy miracle of God-with-us, Emanuel. Once and for all...

Then again, I think we need the annual celebration too. We need to remind ourselves anew, experience the wonder once more and yet once more, coming back to the story again and again.

I still don't have a sense of how to communicate that meaning of Christmas to my younger daughter.

But I do think that perhaps next year, I might figure out how to set up a practice-tree elsewhere in the house that is Joy's alone, with ornaments selected just for her, that she can hang again and again.

Saturday, December 5, 2009

A Pap Smear for Jennifer?

The fall semester is drawing / barrelling to a close, but I have another LEND tidbit to share -- another video from the online social work class in developmental disabilities.

This lecture was presented by Dr. Bill Schwab, a family practitioner and medical faculty member who is highly involved in physician education around disability issues. His lecture, though perhaps a decade or more old, has stood the test of time and has been one of the best segments in the course so far (and the course is almost done!) The lecture topic was issues in health care screening and preventative medicine for adults with disabilities. You can see this hour-long lecture for yourself -- it's free! -- at (You only need to watch Units 1-3; Unit 4 is a repeat of Unit 3, for some reason.)

The lecture raised issues that I haven't really had to think about yet, with Joy only five years old and all. But the years will fly by...

Dr. Schwab's lecture highlighted the story of "Jennifer," a 30 year old woman with Down Syndrome who became a patient of his. When she started coming to him, she had never had a gynecological exam or pap smear, and was very clear that she did not want any such thing to happen. She was in generally good health and had never been sexually active as far as anyone knew or she was willing/able to report. Dr. Schwab's initial approach, in consultation with Jennifer and the staff who accompanied her, involved a gradual getting-acquainted over a number of appointments, and indeed over the course of two years she became comfortable coming to the office, weighing in, having him listen to her heart and take blood pressure. She was still, however, not willing to do so much as lie down on the exam table.

After two years, she had a staffing change. The new staff who came in with her were of the opinion that here two years had gone by, the pap test still hadn't happened, it was time to get with the program and see that it got done.

Dr. Schwab opened the discussion to the audience: What possible approaches (right or wrong) might a physician take in this situation? The audience started firing off suggestions:

  • a more intensive patient-education approach
  • maybe Jennifer would be more comfortable with a female doctor
  • continue rapport-building
  • simply defer the pap test and not push
  • physical compulsion ("make" her do it)
  • change in setting
  • sedation (could be at various levels, up to general anesthesia)
  • has she been molested in the past? / seek relevant history
  • create a reward system
  • modify the screening regimen

They could have gone on.

Dr. Schwab then made a series of very interesting points, some of which you'll just have to see the lecture to pick up... but here are a few of them.

What is the goal for population participation in this screening test among people with intellectual disabilities? Are you trying to get 100% participation... or are you trying to approach the same participation rate as you get with neurotypical (NT) folks? Because there are plenty of NT women who choose not to get that screen. They just never make an appointment for it, or simply decline when asked, and nobody comes to physically compel or sedate them...

Among the values the physician has to weigh are the concepts of personal autonomy versus substituted judgment. With children, NT or otherwise, parents get to make a lot of decisions (no child is going to choose a vaccination or even to go to the doctor at all...) At the other end of life, if dementia or other incompetency comes in to play, there are procedures in place such that people who know the patient and know of their previously-expressed healthcare wishes can make decisions on their behalf. So then you have the question: at what level is substituted judgment appropriate with developmentally-delayed or intellectually disabled adults, who may express preferences counter to prevailing medical advice?

Part of the conversation around any particular screen has to include the effectiveness of early detection (will it help?), the efficacy of the test (how many of the whatever-it-is does it actually catch?), and the question of what the next step would be based on results one way of another. Of course, this conversation applies to NT decision-making too! (Witness the recent change in breast-cancer screening recommendations. Dr. Schwab actually used breast-cancer as an example, and his comments back then are not out of line with the latest recommendations.)

Dr. Schwab made some important observations about going down the road of compelling a patient to be screened against her wishes. What, for example, is the consequence to a woman when she may have been taught protective behaviors all her life around her "private parts" and then she experiences a violation of that in the doctor's office? What message do we send to a person if we promote the idea that people with disabilities have rights and thoughts and opinions that matter -- but not in the doctor's office? What message do we send to the community?

He also said that his experience with partial sedation in such situations has been poor. People who come in under sedation often feel more confused and worried than they already were, feeling even less in control and more abused than they already did.

It's important to be aware that there are modified versions of exams that can be done if the physician is trained and willing. Dr. Schwab described in some detail a modified pelvic exam that involves no stirrups, more reassurance and eye contact (rather than hiding impersonally behind a drape), and no speculum until/unless it's deemed acceptable at the very end of the exam.

The lecture was a little bit cut-and-pasted from its original form, and what's posted right now doesn't actually answer the question of what really did happen with Jennifer (to the extent that she's a real person and not partially hypothetical?) Based on the rest of the content, though, I think I might have a pretty good guess as to what direction the doctor would have been advocating for her.

I think that "Jennifer" and Dr. Schwab's other patients are fortunate people.

Tuesday, December 1, 2009

Random Tuesday Thoughts

I think I'm still on a Thanksgiving-turkey tryptophan buzz. Hope you're up for some randomness, 'cause that's all you're getting today!

  • What a whirlwind of a holiday weekend! Much baking of pies Thursday morning, much gobbling and chattering Thursday evening at Auntie S's place. Different lodgings both Friday and Saturday nights, several sets of family gatherings, whoo!

  • I'm not going to see the movie "Four Christmases." Who needs to go to the theatre to experience multiple family holiday gatherings stacked one atop the other?

  • Joy was a super little traveler. She's so content to ride along in her carseat, especially if we toss her a toy now and then. Rose actually demands more attention than Joy, can you believe?

  • Thursday night we stayed over with Uncle Marathon & Auntie Save-the-Tatas. They have a brand-new kitten that Rose just swooned over (the more so because I have allergies so she can't have a kitty of her own). Joy was willing to give the kitty a pat or two, but she REALLY wanted to play with: the cat toys. We came home with a toy which has a ball & jingle bell on top of a spring growing out of a stand. I am not exaggerating when I say this toy had a catnip-like effect on Joy!!

  • Our Friday visit was to my grandmother, who turned 100 last May. Our visit happened to fall during her move from her retirement apartment across the street into an assisted-living apartment. I want to be not-quite-ready to move into assisted-living when I'm 100... I hope that her new place, bright and sparkling, begins to feel homelike soon.

  • Grandma took us out to dinner Friday night. Joy drank from an open plastic-glass at the Old Country Buffet! Without spilling a drop! Two glasses of lemonade and was asking for more!

  • Saturday we got to see Auntie RatM and Auntie Meerkat -- it had been a long time! We got to take them to the park to play with the girls. Rose swirled herself down the firepole over and over, with great drama. Joy let me guide her in climbing up a somewhat wobbly web-like climber up to the slide platform. What a trooper.

  • More Joy awesomeness, quoting from her OT's update last week: "This kiddo is pretty amazing at motor planning those activities which she's motivated for! ... When [Joy] wants something she's crafty, smart, clever, strong, and fairly precise with her movements. What a great kid!"

  • When I read an update like that, it's no wonder I get confused about labels. In a good way, though.

  • I wonder how many blogposts are waiting for me in my Google Reader? Maybe I'll go find out.

Wednesday, November 25, 2009

Intellectual Disability

In my LEND studies this year I've heard quite a bit about the history of how, particularly in the United States, people with cognitive issues have been labelled and treated.

"Changeling" was one term, referring to the folklore idea that the human-baby must have been stolen away by supernatural creatures and replaced by one of their goblin-babies.

"Mental defective" was another brutal term, in use within the past century. With IQ tests, we began to categorize people into levels of defect: an IQ of 50-69 got you labelled a "moron", 20-49 was "imbecile," below 20 was "idiot."

Then came the term "mental retardation," intended to be more clinical and less pejorative, and less-pejorative categories of mental retardation as well (based on IQ and still in use today): mild, moderate, severe, profound.

Mental retardation, alas, has morphed into the casually-used yet incredibly cruel "R-word," and a new stew of terminology has been brewing: cognitive issues, intellectual difference, cognitive disability, intellectual disability. Until I started with the LEND course, I'd not been aware how much momentum the term "intellectual disability" has been gathering, but it's quite clearly the what's-next terminology. The American Association on Mental Retardation (AAMR) has become the American Association on Intellectual and Developmental Disabilities (AAIDD). (Even though the URL still works rather than re-directing...)

And now it looks like the U.S. government has the prospect of officially catching up. On Thursday Nov. 19 in the U.S. Senate, Senators Barbara Mikulski (D-MD) and Michael Enzi (R-WY) introduced "Rosa's Law", modeled after recently-passed legislation in Maryland. According to a news release from the Autism Society of America,
this legislation would substitute the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.

I like it. I think it's a good direction.

I have to wonder, though, what's the next "R-word" that will stem from the term "intellectual disabilities." It's discouraging to see perfectly good words turn into pejoratives. "Bus", for example, a mode of transportation. "Short," which might be used to describe a story or a stack of pancakes. Put them together with a taunting tone to the voice, and "She rides the short bus" turns into yet one more episode of pain in our children's world.

It also strikes me that here I am talking about intellectual disability as if it applied to Joy... but what does that really mean? Certainly she'd not score very impressively on an IQ test at this point. But there's an awful lot that IQ tests don't capture, and autism and IQ tests have a particularly problematic relationship, something that I really probably ought to do some more reading about. Just for starters, there are so many stories of people with autism who were written off... and then eventually tapped in to a workable means of communication and began to share their amazing minds with the world. Is the relationship of difference to disability something other with autism than it is with other conditions?

In Friday's LEND seminar, we had a lecture about autism and genetics, in which one of the introductory slides on co-morbidities quoted a rate that 50-75% of autistic children have intellectual disability. Joy's umbrella condition, the linear nevus sebaceous syndrome (LNSS), has a classic triad of symptoms - nevus sebaceous, seizures, and intellectual disability - and her diagnosis was based on that triad.

Ah, so much we don't know...

But at least we can work on choosing the right, neutral/helpful-as-possible words to convey the best of what we think we know.


This blog will now go on a brief Thanksgiving vacation. May your turkeys (or tofurkeys) be moist and tender, your gatherings uneventful, and your causes for gratitude too numerous to name!

See you next week!

Thursday, November 19, 2009

A Visit to the Dentist

Dental issues and autism spectrum issues are a touchy combination.

When I put "dentist" into the search box in my Google Reader, searching the autism-related blogs that I regularly follow, I get over 100 hits. Some are nightmare-ish. Many tell tales of hard-won gains, works in progress, dentist experiences that have -- over time -- become productive and tolerable.

I've not written about Joy & the dentist before, partly because our challenges are significantly less than some. Her sensory needs generally swing sensory-SEEKING, so we don't have that incredible mountain of sensory defensiveness to climb. She generally lets us brush her teeth pretty well twice a day with a battery-powered toothbrush, and does a bit of brushing herself after we're done.

Even so, she doesn't like going to the dentist. Who does, really? Well, Rose maybe. She loves our dentist. But I digress. Upshot is, dental visits with Joy are not easy.


The pediatric dental clinic where we take our girls is simply awesome.

They help us troubleshoot. Last visit, they came up with the suggestion of using a lead-apron as a weighted blanket to help Joy feel "hugged" during the cleaning. It worked well, I was all primed to ask for it this time around... and when we walked into the exam room, the apron was already lying on the table waiting for us.

They speak softly and smilingly and encouragingly to Joy. I think they really like her! They don't remind us or hold it over our head that she has bitten and broken dental mirrors in the past! This visit I had randomly snagged one of Joy's Grabber XT chewies to help keep her centered and entertained; the hygienist immediately noticed and suggested that we have Joy use the chewy to help keep her mouth open -- they'll clean while she chomps the chewy.

They sing to her, both the hygienist and the dentist. It's an amazingly calming strategy.

They're open to suggestions. When Rose had a filling done, I discovered that the rooms they use for fillings have video screens. This visit I realized that the regular exam rooms don't have that feature -- and I asked if we could have a video room for Joy's next regular cleaning. They were entirely cool with that. I bet they'll have it written down and I won't even have to ask when we go back in May.

The dentist was fine working without the bright overhead dental-light, when it became clear that Joy wasn't going to tolerate it.

Thank you so much, wonderful pediatric dentist and staff! Worth your weight in gold fillings!


UPDATE: Here's an opportunity for dentists who need to learn to provide service to patients with autism... a free webinar, Fri. Dec. 4 from 10-11 EST, "Patients with Autism: Awareness, Communication and Legal Strategies". From the Michigan Oral Health Coalition. I don't know what's up with the "legal strategies" bit. But awareness and communication can't be bad, right?

Tuesday, November 17, 2009

Elvis Wants a Cookie

Anyone for some positive stories?

  • We've heard so few words from Joy, for so long -- other than the "more" sign, some photo-choice-making on her Go-Talk, and the occasional "uh-oh". But tonight at dessert time, she echoed the word "cookie," clear as clear. Just once. JoyDad and I both did a double-take. And gave her one with chocolate chips.

  • Speaking of the "more" sign. The other day at breakfast, JoyDad came swooping past to distribute kisses to his breakfasting ladies. Joy giggled at him, and tilted her face up. And then after receiving her kiss, she signed a great big "more"!

  • And still more "more" -- today I was home with Joy, and had a few minutes where she was playing in the living room and I sneaked in some plunking on the piano. I've given up trying to play piano when Rose is around. I don't know why, but I get great big huge objections to my playing if Rose is within earshot. So it felt really good today to end a section of the Maple Leaf Rag with a big flourish... only to look up and find Joy grinning at me and signing "more"!

  • Some totally cool imitation/initiation -- this morning one of Joy's baristas reported that Joy had snagged a tissue from the box and used it to go after the barista's nose! She did it again to me later on in the day. Unfortunately in my case it was with a nasty tissue that was blowing around the playground that she picked up. But the thought was in the right place.

  • We had a therapy-team meeting last night, where positive stories are always the first agenda item. Joy bopped around the living room during the meeting, with her Baby Einstein video on repeat-play. She has never shown much interest in the meetings. But last night as the meeting was nearing a close, she decided that she wanted in on the action. She sidled up to Lynda (her Wonder Woman daycare lady) and climbed right up on her lap. And then she did this marvellous flirty little sequence of turning to make eye contact with Lynda, with a great big ol' grin. Over and over.

Accentuate the positive!

Saturday, November 14, 2009

"Every NO is One Step Closer to a YES"

Had another amazing seminar day in my LEND program yesterday. One of the (many) components of the course is policy advocacy, and that was yesterday's theme.

We were privileged to have a panel composed of a parent activist who's been involved in many organizations and policy campaigns on behalf of children with special needs; the executive director of the state's disability rights organization; and a state senator who co-chairs one of the most powerful committees in the state capitol, the Joint Finance Committee.

Together the three of them told an ongoing story of a decade-long effort on behalf of children with disabilities in Wisconsin, who sit for years on waiting lists to get Medicaid-waiver funding for support in their homes. Autism, with its high-profile political status and recent insurance mandate win, has rather jumped to the head of the line in this state; rather than playing one disability off another, they are using it as an example. Kids with autism shouldn't have to wait for support and treatment; neither should any other child with a disability!

In context of this ongoing struggle, where there have been lots of roadblocks and setbacks, they told a remarkable Wisconsin civil-rights story. The star of the story is a woman named Vel Phillips.

Vel Phillips was the first black woman to graduate from the University of Wisconsin-Madison law school. She then became the first black woman to get elected as an alder on the Milwaukee city council, in 1956. One of her first acts as "Madame Alderman" was to propose a fair housing law, to prohibit "red-lining," the practice of refusing to sell homes in certain neighborhoods on the basis of race. The measure went immediately down to defeat, 15-1.

The rules on the council, the panelist told us, was that you couldn't re-introduce a measure for 90 days. Guess what -- 90 days later, she re-introduced that measure. And again, down to defeat, 15-1.

She did this over and over. Her friends started chiding her about it. This is ridiculous, you know, they said. You're not going to get anywhere with this. She heard their objections, but did not heed them. She continued right on doing what she'd been doing.

After a while, some of the aldermen (remember that everyone else on the council were white men) started coming to her privately and apologizing for their repeated "No" votes. I know you're right, they began to say. But my constituency is just not going to back me on this.

Vel went back to her friends and told them, They're apologizing to me! We're making progress!

And that's where the panelist quoted Vel Phillips' dictum:
Every NO is one step closer to a YES.

Well, the years began to pass, some members on the council turned over, the civil rights movement was brewing nationwide, and Madame Alderman started to get a few votes each time she brought the measure forward.

It took six years. But finally a majority came through, both locally and nationally. And, as the panelist told it, the night of that Milwaukee vote, there was a huge crowd awaiting Vel Phillips outside the city building. And they took this petite powerhouse of a woman on their shoulders, and "they marched all night through the red-lined neighborhoods of Milwaukee, where they had never been allowed to buy a home before."

This was the one point in the entire panel presentation, for all its riches, that tears sprang to my eyes. It wasn't getting to ask a direct question of the senator, as fine a privilege as that was, nor was it getting to meet him and shake his hand and exchange a few words afterwards. It was the story.

Two takeaways.

Every NO is one step closer to a YES.

And, stories have power. We have to tell our stories to the people who make things happen. Our stories are crucial in turning NO into YES. Together, we can move policy mountains.

Wednesday, November 11, 2009

Photo Wednesday: Jackson Pollock Edition

Behold, the aesthetic force of a single handful of butternut bisque!

Pollock Butternut Bisque

At least I haven't heard her singing "threedy boogie college"... not yet, anyway.

Update: As requested in the comments, here's the recipe for the "paint"/butternut bisque. It's from a lovely cookbook called Simply in Season.

Tuesday, November 10, 2009

A Dream

The women of our congregation met at the church for women's retreat this weekend.

One of the women at the retreat went home afterward and dreamed about my daughter Joy.

In her dream, there was a man sitting and speaking to a group of people. He was speaking in long, complex, difficult-to-understand constructions.

Joy was with him, maybe on his lap or next to him. And she was translating for him. He'd say some long wordy something, and then she'd say just a few simple words that distilled it down and made it understandable.

My friend said that in the dream she was motioning to me, "JoyMama, come see this, did you know that she could DO this?!"

Joy already helps me understand some things that I might never have come to on my own -- about difference, about acceptance, about hope, about God working in the world.

I fully expect that she will continue to be an intermediary to my understanding, and the understanding of others around her. So much she has to teach us, if we only pay attention!

I am awestruck that Joy's presence touched my friend's dreaming to convey and reinforce that message.

Thursday, November 5, 2009

Almost 200

The title of this post will surely have faithful readers scratching their heads and saying, "Didn't we have a big fooferaw about Post #200 back in the summer sometime?"

To which I respond, "Yup."

This is the almost-200 miles I have run since I started keeping track in February, when I ran my first 5K race.

This morning's 5K run at 5am (a clear frosty moonlit morning) brought me up to 199.

I plan to hit the 200 mark running with some women from church this weekend. This year's Women's Retreat is this Saturday, right here in town rather than up in the wild woods, but I'm sure we'll manage a wild and wonderful time anyway.

200 miles isn't much of a total for someone like Joy's Uncle Marathon (or UncleDO or Auntie RatM either, come to think of it.) But for me, it's pretty special, particularly since I managed to start back running again after being interrupted by the red-white-&-blue-foot phenomenon this summer.

Yay, wild women!

Monday, November 2, 2009

Direct from the Researcher

Another week, another amazing LEND opportunity!

The center that hosts "my" LEND program has an ongoing brown-bag research-seminar series where distinguished researchers come in for one-hour presentations on their ongoing work. One of the LEND assignments involves attending one of these presentations each semester and reporting back. My interdisciplinary team (with an autism focus) chose to attend last Friday's presentation: “Gene x Environment Interactions Contributing to Autism: Lessons Learned from the UC-Davis Center for Children’s Environmental Health and Disease Prevention,” presented by Dr. Isaac Pessah.

Little did I know when we signed up at the beginning of the semester to attend this talk, that Dr. Pessah would be discussing an article that would go online as a pre-pub just a week and a half before, and already be getting the blogospheric once-over right before we got to hear him in person!

The article in question is Blood Mercury Concentrations in CHARGE Study Children with and without Autism. The authors are Irva Hertz-Picciotto, Peter G. Green, Lora Delwiche, Robin Hansen, Cheryl Walker, and Isaac N. Pessah; and the sponsoring institution is the MIND Institute of UC-Davis.

Quick detour about the MIND Institute -- this is an organization whose co-founders were parents of children with autism, searching for a cure and ready to lay the blame with vaccines. (See All Things Considered transcript from Jan. 20, 2003). Since its inception, the MIND Institute has focused on environmental considerations in autism. They operate from the position that the rise in autism prevalence can not be entirely accounted for by changing definitions, diagnostic substitution, and increased awareness/education.

Given that background, it's not at all surprising to see a study comparing mercury concentrations in the blood of children with and without autism.

The conclusions might not be expected, though.
Conclusions: After accounting for dietary and other differences in Hg exposures, total Hg in blood was neither elevated nor reduced in CHARGE Study preschoolers with AU/ASD as compared with unaffected controls, and resembled those of nationally representative samples.

They used a substantial sample of preschoolers on the autism spectrum, plus two control groups: one group with non-autism developmental disabilities, and one typically-developing group. They interviewed mothers to determine household and medical and dietary exposures to mercury.

It turned out that the biggest contributor to blood mercury levels in all groups was fish consumption. Once you account for fish consumption, there were no significant differences in blood mercury levels between groups. In fact, before controlling for fish consumption, the blood mercury levels for the autism group were actually lower than the other groups. Because the ASD kiddos ate less fish!!

Sullivan over at LeftBrain/RightBrain does a fine parsing of the study and the various online reactions to it. I won't try to re-do a job that's been already well-done!

For me, it's rather a thrill to be hearing first-hand, right from the mouth of one of the actual study authors, that the ASD kiddos had similar blood-mercury levels, and any differences were pretty much all about the fish. Now, this doesn't say anything directly about mercury and autism causation. The authors are very straightforward about that. Still it's another useful counterweight to what has become an insidious public perception. It's not the thimerosal, folks!!

P.S. You may have noticed that the title of Dr. Pessah's talk was about genes & environment. He also addressed a second paper, not yet publicly available, that delved deeper into genetic complexity than my poor notes were able to keep straight in the absence of being able to refer to the actual PowerPoint slides! When the paper actually comes out, I might take a whack at it. Or it still might turn out to be pretty much beyond my ken.

Sunday, November 1, 2009

A Case of the Shreds

Joy loves her pillow, the one she sleeps with in her tented crib.

As in, I mean she luuuuuvs her pillow. I think the word I'm looking for is... well, humping. Although her senior barista tactfully refers to it as "making friends with her pillow."

This pillow-relationship seems to have entered a new phase this week, however. As the week progressed, I started to notice that her threadbare old pillowcase was starting to collect little rips. I threw it out, only to have the phenomenon happen a second time with another old pillowcase. So I tossed that one too, and this morning pulled out one from the JoyParents' regular pillowcase rotation.

Here's what she did to her parents' pillowcase during naptime today:

Shredded Pillowcase
Sometimes love really hurts!

We're going to try a flannel pillowcase tonight.

Wish us luck.

Friday, October 30, 2009

You're Always Doing Something

You're always doing something,

said seven-year-old Rose to me yesterday morning.

(She was home from school due to teacher's-union conference; I was home because Joy's been under the weather, so it couldn't be a babysitter day.)

I'd been swirling around picking up shoes, vacuuming, rinsing dishes, re-allocating piles of paper, my usual morning flurry. I thought for sure this was a comment on my swirling, and wondered if she thought it was a good thing or not.

"What do you mean, honey?" I asked.

"Well," she replied, "Even if you're trying not to breathe and stand as still as you can" -- and she demonstrated -- "you're still doing something, because you're trying not to breathe and stand as still as you can."

She's right. No matter whether you're in full swirl mode, or laid back as can be, you're always doing something!

So, here's a little bit of what we've been doing the past few days.

As I mentioned, Joy has been sick. There was a fever going around the daycare the other week, and we thought she'd escaped, but it seemed to hit her later and longer than the other kids. I was all edgy about H1N1 because she's on the fragile side as far as the co-morbid conditions that seem to go along with the swine flu doing its worst, and she hasn't had the vaccine yet (she's got an appointment today!) But it was just the fever, none of the awful cough and other stuff. She was considerably perked up yesterday and I think we'll have a pretty normal day today.

Speaking of doctor's appointments, I did take her in on Wednesday when the fever seemed to be lasting longer than it had for the other kids, for an ear and throat check since she can't really tell us when those are hurting, plus her pain tolerance is so high. When I got in the car to make the half-hour drive across town, it started making a roar like a Harley. (OK, I know the Harley roar is so distinctive it's patented. But a Honda CR-V isn't supposed to sound even close to a Harley.) The muffler had gone out. So I had to drag Mike home from work to take that car in, and provide me with the other car. Arghh.

I did get to take advantage of a beautiful fall day on Tuesday to put Joy in the stroller and take a run, though. Ordinarily I can't do that because I'm home with her while she's got therapy, but there's no therapy when she's got a fever! The weather has swung between gorgeous and cold-n-rainy, and the leaves have gone from full-peak to mostly-on-the-ground this week. Halloween should be fair and chilly. The girls are going to be black and white Dutch bunnies, as specified by Rose. It did involve some homemade fleece hats with bunny ears made of pipe-cleaner and felt, and I taught Rose how to make pompoms out of yarn so we could have the tails exactly the right size and color. Like I have time for all that! but Rose was very appreciative. Now I just hope that Joy will keep her hat on when we go door to door!

Here is a little bit of autumn eye-candy, taken from our windows front and back.

Burning Bush & SpireaHere's our burning bush and spirea out the front.

Cooper's HawkWe think this is a Cooper's hawk. Rose had a great view of it from her bedroom window; it sat on the feeder for a long time, which gave us lots of chance to pore over the possibilities in the bird-book.

Time for me to go do my next somethings of the day.

Monday, October 26, 2009

Future Musings

I've got a brain-full again, with this LEND program stuff. And a schedule-full. Friday was the busy-est day I've had in a long time. Clinic observation, lunch conversation, interdisciplinary team meeting, lecture on ASDs, autism self-advocate/parent panel, trainee meeting for those of us with a special autism focus, an hour home for supper, then a glorious evening of Boggle-playing.

Spin, spin, spin! And almost every part of it (well, except slurping down the supper) was reflection-worthy.

But I'm only going to blog about the panel. Four speakers, a 30-something-year-old man who has autism, his mom, his support broker, and another mom of 4 kids with the youngest two on the spectrum.

The star speaker was a fascinating guy. He has a university bachelor's degree in mathematics (!), his own apartment, and a patchwork of 3 jobs (not all paid.) He and his mom and support broker make up a formidable team! He read his speech in not quite a monotone, but less inflected than most folks would do. There were definitely intentional laugh-lines in there though: "The last thing my parents expected was to see me on the speaking circuit, but here I am!" One thing that struck me personally was when he described how he used to take his mom's hand and throw it at the cookie-jar. He said he did that because the hand was what gave him cookies. It didn't occur to him that it made a difference that the hand had a mom attached. Yikes -- Joy has been doing that hand-flinging thing with us, especially at the dinner table if she sees something she wants that's not on her plate.

For all his mathematical brilliance, and his amazing origami creations, and the stunning fractal art he creates on his computer, he doesn't have an easy time of it. He described it as literally painful for him to make eye contact, which in and of itself is a pretty major social barrier. He has various sensory sensitivities that take constant energy to deal with. He has a hard time with ambiguities or changes in plan -- we saw it happen when his cell phone rang during his speech, and he temporarily froze. I don't know what would have happened next if his mom had not been there to calmly advise him to turn off the phone and make sure he followed through.

His mom is a practiced speaker as well, a devoted advocate, and kept throwing out one zinger after another.

"There's what, 40 students in this room? At least four of you will probably have a child with a disability. You just don't know who you are yet."

Her perspective on the role she & the staff play for her son is that he outsources the administrative work to them. Like the deadly paperwork. Like, for instance, when his father retired, which caused him to have to accept a slightly different flavor of Social Security, which put his income just slightly over the limit allowed by his medical assistance...

The other mom was a disability rights activist and LEND graduate, very likeable and engaging speaker. What I'm chewing over from her presentation was her announcement that she has a "secret doctor" for her spectrum children. "The primary care doctor that we see is... how can I say this... rigid." Rigid, in this case, meant that the doctor wouldn't prescribe hyperbaric oxygen treatment (HBOT). HBOT is an "alternative" therapy, not FDA approved for autism treatment -- here's what one of my favorite skeptics, Prometheus at A Photon in the Darkness, has to say about HBOT. Anyway, this mom takes her kids down to Florida to be treated by a doctor who has kids on the spectrum himself and practices HBOT. So the 130 HBOT treatments that the one son has had, she feels are a great investment, but they're a secret from his regular doctor.

Oh-my-goodness. In other words, her kids' PCP is missing important information about a huge treatment component. Her story really caught me by surprise. I'm aware, of course, of parents who switch doctors when they decide they want to do alternative treatments and the first physician doesn't approve. This "secret doctor" situation hadn't occurred to me though.

I have to confess that a big part of my empathy goes with the physician, with what little I know about this particular story. What's a medical provider to do? How to stick to one's medical principles, and advise people against treatments that the science & your expertise & training tells you are worthless at best and dangerous at worst, without being so "rigid" that your patients end up going behind your back? Is it better that this "rigid" doctor keeps seeing the kids without knowing the full story, or would it be better for mom to just go ahead and switch, to seek primary care with someone who supports the treatments of her choice? How often does this happen, I wonder, that parents keep one foot in each world and the Western/allopathic/evidence-based doc doesn't know what's happening with the patient's alternative treatments? (Have you done it yourself, if you're still with me after this paragraph? If so, how does that fit for you?)

The most chilling words from the panel, though, came from the support broker. "People ask me when to start preparing for the transition to adult services -- and I say, 'At birth' and I'm only partly kidding." We'd heard last month about the waiting list for housing support in the community from a family panel of LEND faculty. This woman put it even more starkly: "People are not getting off that waiting list until their parents DIE. And then the system goes into crisis mode, and finds something for them, that might not be the best thing..."

The thought about preparing for adult services transition during childhood -- kinda makes me want to curl up in the fetal position and stick my fingers into my ears. Joy's FIVE, fer cryin' out loud. We have no idea who she'll be at age 21 and beyond, and what she'll be capable of. And it's not like we don't have plenty of plates in the air already. And it's not like the service structure might not be totally different in a decade and a half. But the support-broker lady did make an interesting comment about the utility of the forward-looking perspective: "Instead of teaching them a busy-box, teach them a tape-recorder." Hmm.

The mathematician's mom chimed in too, saying that her rule of thumb was to start exploring services five years before they were needed. This led her to the Department of Vocational Rehabilitation (DVR) when her son was 15 or so. The guy at the DVR was a little incredulous - "We can't do anything for him at this age! Come back again when it's time." But then she asked him what he would do if it were his child. And he said that he'd emphasize putting together a resume as early as possible. Keep track of anything that could possibly be construed as any kind of work experience whatsoever, and get it documented early. And that, she found, was a huge help.

The whole realm of thinking about adult services seems to be coming at me from several angles this past week or two. The new issue of Autism Advocate from the Autism Society of America focuses on adult services. And the social work class on developmental disabilities that's part of my LEND experience is in the middle of a unit on adult services too.

One frustrating thing about the online social work lectures is that the lectures were recorded over a span of years, and it's not clear how old each one is. I think some may be almost 10 years old, and the others just a couple of years. It serves well for the history of services in Wisconsin, but not so much with the cutting-edge state of affairs.

There are some major success stories around the history of services for people with developmental disabilities. One lecturer said that back in the 1930s, when institutionalization was THE option, life expectancies were down around 19 years (he didn't qualify that with who exactly "counted" as being in that group). Basically, hardly anyone in that group outlived their parents. By the 1970s, it had shot up to 59; more recently, it's more like 66!

A parallel success story is that starting in 1980s in Wisconsin, people started being moved from the institutions into the community, with the support & dollars following them. The lectures are full of examples from this effort, and we also heard about one such fellow from his guardian in the previous family panel seminar. If I'm understanding it correctly, that movement continues, and I've heard rumor that one of the three major Wisconsin institutions is slated to actually close its doors at some point in the foreseeable future!

But then there's also the parallel victims-of-their-own-success stories (depending on how you look at it!) All these kids who have been able to grow up well-supported at home, with services from Birth to Three and the schools... living plenty long enough to go out on their own, if only the supports were there! Instead, though, we've got the waiting lists. A less hopeful statistic from another of the lectures claimed that only 12-15% of people with intellectual disabilities ever live outside the family home...

My brain is full. And there are soooo many things to work on for the future!

Thursday, October 22, 2009


You heard it here first! :-)

I haven't talked about potty issues much lately because there's been nothing to report. (Unlike various fellow-bloggers who seem to be on a gas-passing roll lately...)

At age five-and-a-half, Joy's still in MA-funded diapers, and though she's had several little strings of potty-pee successes over the past few years, basically there's been little movement on the whole toilet-training issue here (heh, heh -- "movement"!) For what seems like forever, I've been sitting Joy on the toilet, with a seat-insert so she can balance more easily, before evening bath. She's been fairly willing to sit on the pot and play with a board book together for a couple of minutes, but rarely produces.

Something interesting has been happening lately, though. In the past week or so, she's been waking up dry in the morning, more often than not. We've also been seeing some incredible diaper-leaks during the day, veritable waterfalls.

I think she's learning to "hold it." I think she probably also likes the sensation of "holding it," little sensory-seeker that she is.

Tuesday morning she woke dry, I tried a toilet attempt but she let loose between diaper-removal and actually getting onto the pot. Wednesday morning she woke dry, we tried the potty thing, she sat for a while without producing and we put the diaper back on (still hadn't peed by the time we got to daycare). This morning she woke dry, sat on the pot for a while, and then let the waterfall commence appropriately!! Woohoo!!!

So now what?

I've been rather avoiding the whole toilet-training issue, seeing as how life has been plenty full on its own. The Google results on autism & toilet training are pretty depressing, all sorts of stuff about spending hours and hours in the bathroom (like Joy would be willing, let alone me having that time to spend in the first place), or ABA incrementalism regarding "first you get your child to be willing to go through the bathroom door, then s/he needs to be able to remain in the bathroom for five seconds..." etc., which is obviously not where we are.

There have been several obstacles to toilet training as far as Joy is concerned. First is that she's not much of an imitator, so having a potty-competent big sister isn't all that helpful. Second is that she doesn't seem particularly aware of having a full diaper, either wet or messy (probably likes the sensation, if anything.) A big third thing is her communication delays.

Is there any chance that if we view this pee-holding as a new threshold of maturity, and push fluids and take her to toilet-sit fairly often to increase chance of success... that we'd actually end up with a potty-training trajectory? Or should we just add the morning potty-sit to the bathtime potty-sit rather than making a big push right now (heh, heh -- "push!")? Or do we need to plan for some fancy autism-specific training regimen?

Thoughts, dear been-there-done-that readers?

Tuesday, October 20, 2009

Wisconsin Autism Insurance Rule Published

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

Apologies in advance to my regular readers for yet another policy-wonk, Wisconsin-specific post.

But, this is information that needs to get out there. I'll do a very sketchy first pass at it, and at a later date I will link to the consumer fact-sheets that the Autism Society of Wisconsin (ASW) and other organizations are now feverishly developing.

[NOTE: If you have any specific questions that you would like the factsheet/FAQs to address, please let me know in the comments. I have an "in" with one of the movers-and-shakers who is working on the FAQs, and I've been asked to pass your questions along!]

So, here's the deal. The legislation that passed in the Wisconsin State Budget in June 2009, requiring insurers to cover autism treatment, was just the first step. The second step is that the Office of the Commissioner of Insurance (OCI) for the state had to hammer out the corresponding changes to the insurance rules, on a short timeline. To make this happen, the OCI convened an Autism Working Group, a group of insurance company reps, legislators, advocates, parents, and providers who have been working like crazy since July to define terms for the document that spells out what insurance companies do and don't need to do.

That document is now published, at (note that it opens a PDF document).

The press release announcing the document is at

The document is what is known as an "emergency rule." This means that, while it goes into effect immediately due to time constraints, and in this case is good for one year, an ongoing process has yet to take place that involves hearings (at the OCI and likely also before the Joint Committee for Review of Administrative Rules) and a legislative process and further opportunities to monkey with the document before it becomes permanently enshrined in the rules.

However, until that long drawn-out administrative rule finalization process happens, the emergency rule applies, for at least a year.

The emergency rule takes effect November 1, and will start affecting actual insurance coverage whenever the insurer's next new plan-year begins after that date. For many insurers, that new plan-year will begin January 1, 2010 -- so that is when coverage would actually start.

Here are a few highlights (note that this is my own reading, backed by additional conversations with people involved in the process -- but I am no expert. The upcoming FAQ from the ASW & friends will be much more authoritative):
  • Wisconsin's Medicaid Waiver program (which is how Joy currently gets her treatment) was the basis from which the Autism Working Group began their deliberations -- the insurance coverage is meant to be reasonably similar on the whole to what people are getting through the waiver right now, though there are plenty of differences, both good and not-so-good.

  • The group did not spell out which specific treatments have to be covered, though behavioral principles are a necessary component. Instead, they hammered out a set of requirements as to what level of published evidence qualifies a treatment to be "evidence-based" for purposes of the rule. The introduction to the document states that this was done such that ongoing research can be taken into account without needing to change the rule. My understanding from outside conversations is that the evidence-requirements were crafted with the intent to include the treatments that are being covered by the waiver program right now.

  • Insurers will be required to cover up to FOUR years of intensive-level autism treatment (to the tune of $50,000 per year as stated in the legislation), as opposed to the up-to-three years covered by the waiver program. However, any intensive-level service that has already happened when insurance coverage starts, whether under the waiver or out-of-pocket, counts toward those four years.

  • (update to original post) As stated in the legislation, insurers are also required to cover what they're calling "post-intensive" treatment to the tune of $25,000 per year. This is autism-related treatment for people of any age. Since I am not as familiar with post-intensive services under the waiver, I can't make a good comparison -- but I think that the post-intensive waiver coverage is somehow time-limited (certain ages? certain number of years?) and the post-intensive insurance coverage, as I understand it, is not.

  • Those who have been reading Elvis Sightings for a while may remember my ranting and advocacy around the waiver program's [in-my-view-unreasonable] insistence on having all therapy take place in the home (as opposed to including other natural settings). Good news -- the language in the new rule only requires a majority of the treatment to take place when a parent is present, and that it should be "provided in an environment most conducive to achieving the goals of the insured’s treatment plan." Can you say, "Joy's awesome daycare at Lynda's place"? Sure, I knew you could! Woo hoo!

  • Another change from the waiver program, this one not so fortunate: under this rule, insurers are not required to cover therapists' travel-time. I do not know how this will work out in practice; some service-provider agencies may choose to "eat" this cost in order to continue to be able to hire therapists...

  • While there is not a list of specifically included therapies, there is a specific list of exclusions. Among the therapies NOT covered: acupuncture, hippotherapy, auditory integration therapy, chelation, cranial sacral therapy, hyperbaric oxygen therapy. (See the rule document for a complete list.)

Well, that's a few highlights from my perspective.

There are many questions yet to be answered, and most caseworkers and providers and insurers haven't got these answers just yet... will my particular insurer cover my particular therapy provider? How does my Katie Beckett (non-waiver) medical assistance coverage play in? Does our family still keep our county caseworker if the waiver was where that relationship started? What about co-pays & deductibles? Et cetera.

We just don't know yet. But the answers will have to be worked out soon.

Joy's particular service provider ("Agency 2") has recommended that current waiver-based clients with insurance contact their insurers. Our plan is to make that contact and ask the insurer the question: how can we proceed in order to avoid any kind of gap in treatment coverage?

Stay tuned.

(P.S. My thanks to JoyDad for helping me sort out the administrative rule-making process!)

Friday, October 16, 2009

Rose's Mini-Pumpkins

These beauties are courtesy of Rose and Rose alone.

My only contribution was to get down the permanent markers and hint at certain dire consequences should any marks get on the nice wooden desk.

Yay, Rose!

Tuesday, October 13, 2009

Random Tuesday Thoughts

It's a good day for some random!


  • The lovely fall colors have migrated their way down from the northwoods to here. Today the bright leaves have a clear blue sky for a backdrop, with crisp fall temperatures.

  • Joy and I walked Rose to school and then kept going, with me pushing her jogging-stroller along paths of a nature conservancy across from the school. We saw a hawk, a downy woodpecker, and two different groups of wild turkeys.

  • Joy kept her mittens on purt-near the whole walk. It took some intentional distracting on my part, though. Mitten-removal has become a giggly game, to be embarked upon for the adult reaction. It will be less funny when the temps drop into the teens and beyond...

  • It felt like the teens on Saturday morning as I huddled in my camp chair along with the other chilled parents on the sidelines of Rose's soccer game. I didn't dress her warmly enough for SNOW FLURRIES either. Was half expecting a mutiny, but she kept playing. What a trooper.

  • Ordinarily I'd've sent JoyDad to the game, but I wanted the leverage to send him on a computer-buying mission (better him than me). Given the virus-munched state of our old (and yes, it's really quite old) computer, we really wanted to walk out of a store with a new desktop that we could set up right then. Except that Windows 7 is coming out October 22. So stores have no computers in stock, because they don't want to be stuck with a single CPU with the icky Vista operating system which NOBODY will buy once Windows 7 is out. Fortunately JoyDad ran into a friend in one of the stores who was willing to loan us a laptop.

  • The virus-munched computer is supposedly ready to bring home from the computer hospital today. Now watch, we'll all catch H1N1 because some unfortunate sick tech coughed and sneezed all over it...

  • Speaking of sneezing, a weird thing happened on the bus yesterday morning. I sit down, pull out my notebook, some gal (student probably) comes and sits next to me. And I start sneezing. Once, twice. Sniffle, grasp for tissues. Three, four, five. Nose and eyes both start running. Big ol' nose-blow. Six, seven. I don't dare make eye-contact with my seat-mate, but she's obviously starting to shift around and get uncomfortable. Eight, nine. Sniffle, snork. The bus slows at the next stop, she bolts out of the seat and flees to sit elsewhere. And... the sneezing stops. Apparently I am deathly allergic to certain fellow passengers. Who knew?

Ah, the random is strong today.

Saturday, October 10, 2009

Help me with my homework?

Greetings all,

Sorry I've been a little bit scarce around here. Our home computer got virus-munched earlier this week, which has caused certain spinning plates to go all wobbly. With any luck it'll be back up and running by Monday sometime. Till then, I'm making extra trips to the office for e-mail forays and LEND coursework. Like now.

So, speaking of my leadership coursework... want to help?

One aspect of the course is a policy-advocacy component, which will involve selecting and researching a policy issue, and eventually visiting with a legislator. I need to brainstorm potential autism-related policy areas among which to choose -- as you know, I've been active around the issue of autism-insurance in Wisconsin, but the legislation did pass (yay!) and I'm thinking of taking on something else.

Here's the brainstorm part of the assignment:

Brainstorm a list of challenges that children and youth with autism and their families face.

I figure one might add "upon which legislation might be brought to bear." But maybe that includes all of them, if defined broadly enough?

Anyway. Your assignment, if you choose to accept it, is to list some such challenges for me to add to my own list. Who knows, I may pick your issue for my big policy push!

Ready, set, comment!

Tuesday, October 6, 2009

Pot of Gold

We returned yesterday from our traditional bit of October insanity -- a three-day weekend getaway to the northwoods of Michigan's Upper Peninsula, where JoyDad's family has a couple of rustic cabins on a little lake in the back of the beyond. The October trip lets us help take care of closing down the property for the winter, taking the boat and pier out, this time with both JoyDad's brothers and father.

It's about seven hours in the car each way, this three-day weekend of ours, for the privilege of enjoying woodstove heating, cold water from a pump, cold outhouse. Plus this year, we'd been watching the forecast with dismay, as the Weather Channel hour-by-hour showed a greater than forty percent chance of rain for every hour of the dang weekend! I had visions of being cooped up in the cold cabins the entire time with the rain pouring down, trying to entertain two damp-bored-miserable kids.

Shouldn't have worried. Without rain, you don't get this:

And in fact, the rain was on and off, more off than on really. We got to go out in the boat, and Rose & I managed a (success-free) fishing run with the uncles. And while we were out fishing, one of the eagles that nests in the tree on the left of the above photo sailed about overhead, bringing branches to shore up the nest for the winter!

I went for a fine walk in the woods with Rose, and we took another one as a family, without even getting Joy too muddy! Her favorite stim for the weekend was long-stemmed grasses, so she did a lot of dropping to the ground in order to pick the next one. Joy also managed to escape her father's clutches and go walking into the lake at one point, while her sister was playing on the pier.

Lake-walk and all, Joy was a happy camper pretty much the whole time. I think she was relieved at the break from the incessant therapy that she gets subjected to at home. We did a lot of playing on the screen porch during the drippy-er bits of the weekend, and she let me take a whole sequence of photos where she looked right at me and did this:

And this:

I blew bubbles upon bubbles for Joy to pursue and pop, there on the screen porch. Rose got into the action too:

The two sisters enjoyed one another a lot this weekend:

So now it's back to reality, back to a whole lotta laundry, back to the therapy schedule and work and studies (which I ignored totally while up at the lake).

What a priceless getaway, though. Once again. Rain, rainbow, and all.

Friday, October 2, 2009

To Cancel a Thursday

Fortunately, we didn't have to cancel a thing yesterday - happy first day of October, and all.

Last week was a different story.

Mid-way through her evening therapy session last Wednesday, poor Joy suddenly began to empty the contents of her stomach onto the dining room floor. I could not believe that one little body could hold so much! We ended the session, bathed the girl, started the laundry, and then had two more rounds of heaving as the evening went on. She slept through the night, but there was no way that we were going to be able to go with the Thursday as planned. JoyDad & I were both scheduled to work, but decided to split the day at home to take care of Joy.

So who did we need to contact?

1) Lynda, Joy's regular daycare lady, to let her know of the incident and ask if Joy was the only one. (She wasn't - the bug had been going 'round the daycare, but at least we learned that the barfing was short-lived and the recovery was only about a day.)

2) The babysitter for the day, the new one we've hired to come into our home on Thursdays to supervise the Thursday therapies, thus shaking loose the hours I need to do my LEND leadership training program this semester.

3) Four regular baristas (therapists), plus a supervisor and a trainee.

4) The neighbor who walks Rose home from school, to let her know to call our home number and not try the babysitter's cell if they decided to play at the park on the way home.

5) My workplace.

6) JoyDad's workplace.

7) The evening babysitter - who actually got to us first because she wasn't feeling well herself! I had been planning to get out for a rare chance to see a show in which JoyDad's band was opening for another act. (Dagnabbit).

8) The wife of the singer in the band, whom I was going to pick up on the way to the gig.

OK, by my count, that's 13 notifications.

We're blessed to have that many people involved in our lives, and Joy's, and Rose's.

But... mercy.

Fortunately Joy recovered swiftly, as expected. None of the rest of us have shown any signs, and now that a week has passed, we're expecting that we're good to go. Which is helpful, because we're off to the northwoods for the weekend, starting early Saturday morning.

See you afterwards!

Tuesday, September 29, 2009

Linear Nevus Sebaceous Syndrome

There's a new information site and support group in town.

(Well, OK, in town virtually speaking.)

Linear nevus sebaceous syndrome is a rare neurocutaneous condition about which information has been awfully hard to find, and the lack of a dedicated support group has left folks (like Joy-parents) with no place to turn.

Behold, LNSS Connections.

And its corresponding LNSS-Connections Yahoo! Group.

Comments, suggestions, etc. welcome!

Monday, September 28, 2009

Elvis Has Left the Campfire

When last I wrote, the Joy-family was off to a weekend's worth of activities, to include a camping adventure with our congregation at a nearby state park. Last year we had a fine success with this annual tent-camping event, Joy's first overnight campout beyond our yard. We did another successful backyard campout on Labor Day weekend, but ended up deciding not to take the tent out this Saturday. JoyDad was feeling under the weather, and for a while I thought I might be taking the girls for the evening on my own.

Fortunately, though, he perked up enough to make the trek to the campground after Joy's afternoon therapy, so the whole family could take part in picnic potluck and campfire conviviality.

Joy sat well at the unfamiliar picnic table and ate, per usual, a wider variety of goodies than her sister did. For entertainment afterward, she found a plastic band from a firewood bundle that she held onto almost all evening, a fine distraction from the fall leaves on the ground that might otherwise have consumed her attention (and that she might have attempted to consume herself in greater numbers than she did!) I spent a nice chunk of time blowing bubbles for her as the dusk was falling, and then when it got too dark to see bubbles, we moved over to the campfire.

Our congregation is big on singing, with four-part a cappella hymns a regular feature of our worship. This translates to lots of lovely harmony on the folksongs around the campfire as well. JoyDad always brings along his guitar to these events; sometimes one or two other people will bring guitars as well, but this year there were three other guitars, two banjos, a ukelele, and a bunch of copies of the folk-song compilation Rise Up Singing.

So at one point between songs, JoyDad inserts a query as to whether there's anything by Elvis in that thar songbook. And our local Elvis impersonator (what, doesn't every congregation have a local Elvis impersonator?) asks JoyDad does he know the opening lick to "Suspicious Minds." And JoyDad, who knows that song forward & backward, swings into the opening bars without a pause. Someone shines a flashlight-spot on our Elvis dude, and we get the entire song, all the moves and facial expressions and rich Elvis voice -- the whole deal. Yours truly, with Joy on my lap, was able to chime in with some of the other gals on the back-up vocals... it was quite the highlight of the evening. Elvis sighting at the campfire, who knew?!

Thank-you. Thank-you-very-much.

Saturday, September 26, 2009

Our Choice of Frame

Another seminar-Friday has gone by for the LEND program, so of course my brain is full once more.

One of yesterday's seminar topics involved delivering developmental screening results to parents, when the screen had turned up some areas of concern that needed a more thorough assessment.

The angle that was echoing in my mind:
What if that screen were an autism screen, and the family's image of autism had been informed by THIS:

This celebrity-directed video (Alfonso CuarĂ³n, of Harry Potter and the Prisoner of Azkaban fame) was released by Autism Speaks on September 22, in an attempt to raise autism awareness. As Autism Speaks co-founder Suzanne Wright put it, "We will all help shine a bright spotlight on autism."

I find nothing bright about this video. It portrays autism, as exemplified in images of people (mostly children) with autism, as a relentless monster that will inevitably destroy the lives of the families of those in its clutches, unless those families devote every waking moment to its defeat.

A sample from the transcript:
I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late...

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain...

I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

The second half of the video portrays families surrounding their children and vowing to defeat autism, for example, "We will spend every waking hour trying to weaken you."

I know that this reflects the feelings of a sizeable group of parents.

Let me say very clearly (in case you don't already know something of us and our experiences with Joy):

We do not live in this fearful, desperate frame. And we do not believe that this is all there is to look forward to!

Joy's challenges are substantial enough that we could have chosen a path of fear and anger and blame. She does not speak. She is not toilet-trained, and would play with her feces if we did not keep her wearing onesies. She does a lot of protesting these days, and grabbing, and throwing. She needs a constant watchful eye.


Our marriage is strong. We have the money we need, though we have never been wealthy and times are of course tight. We generally get the sleep we need too. We laugh much, much more than we cry. Joy goes to daycare, to church, to the zoo, to restaurants, camping, swimming, and much much more.

And meanwhile, she is learning, growing, smiling, kissing, and enriching our lives so very, very much.

We enable this richness through our choice of frame, our choice of how we will view Joy and her uniqueness and her strengths as well as her challenges.

How much harder it would be to make the positive choice if all we heard were the messages of the tenor of the "I Am Autism" video!

One of the suggestions that was conveyed during the seminar presentation, for all the future leaders in developmental disabiities who were present, was this (not an exact quote but the basic idea):

Remind parents, whether you're delivering a concerning screening result or talking about an actual diagnosis, that their child is still the same person that he or she was yesterday. All the things you love about your child, everything that was wonderful about your child yesterday, is still true today.

I'll leave you with a link to a different recently-published resource, this one from the Natural Supports Project that I blogged about earlier.

It's a booklet published at the beginning of 2009, called The CORE of a Good Life: Guided Conversations with Parents on Raising Young Children with Disabilities. The link goes to a page about natural supports in early childhood, where you can find a futher link to the actual 62-page PDF document (which is over 33Mb in size, just so ya know). It's aimed at both providers and parents, to guide conversations that explore what is important to families around ordinary experiences and relationships, beyond therapy and treatments. The approach is designed across developmental disabilities.

CORE stands for:
- Community connections and participation
- Opportunities to explore and pursue our interests
- Reciprocity in our relationships
- Enjoyment in our lives
Here's how the guide starts:
We begin here, in the early years, to empower parents to create a vision for their child's life and explore opportunities in the community that begin to build that vision.

The strategy is called Guided Conversations, described in the book thusly:
Guided Conversations are an invitation to think about;
- How to talk about children and influence how others perceive them;
- How parents identify the ordinary experiences of being a family; and
- How parents sort through the relationships that may be available to them and their child that they have not yet considered.

How to talk about our children and influence how others perceive them.

I submit that the proper use of the Autism Speaks video is as Exhibit A about how NOT to talk about our children. 'Nuff said. Let's move forward.

And the next move in this household is that we have to make a grocery list so we can take our daughters shopping, and then if the weather holds, get ourselves organized for the church campout tonight. Yes, that would include Joy. Of course.