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.

Here's our burning bush and spirea out the front.

We 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.

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!

Leaked!

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?

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
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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 http://www.oci.wi.gov/rules/0336em09.pdf (note that it opens a PDF document).

The press release announcing the document is at http://www.oci.wi.gov/pressrel/1009autism.htm.

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!)

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!

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.

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!

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.

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!