Happy Birthday, JoyMama!!!

Yes, that's right, JoyMama is another year older. And another year wiser.

Rose and I just got done wrapping the package that contains JoyMama's gift (can't tell you what's in it, it is a SECRET!). We plan to go out to dinner tonight to a local brew pub, and then come back home and have some birthday cake. Because it's not a birthday if you don't have cake, right?

Join me in wishing JoyMama a great big HAPPY BIRTHDAY!!!


UPDATED by JoyMama:
Aww, JoyDad. You stinker. *KISS*

Well, here's the cake. My very favorite birthday cake, spice cake with homemade penuche frosting:



JoyDad and Rose got me a small CD player for treadmilling purposes. Just exactly what I wanted! I assembled a mix CD today. Will try it out Tuesday.

On my birthday, I ate cake instead of running.
Today, I ran outside in the morning. Then I ate cake for breakfast.

Life is good.

One More

OK, one more running post. One more Bobby McFerrin song. Then I promise I'll get back to the anatomy of Joy's days, at least until the Valentine's Day race!

Here's the Bobby McFerrin song that's been in my head today, again from the Medicine Music album. It's called Discipline:

For those who have been trained by it,
no discipline seems pleasant at the time but painful,
no discipline seems pleasant at the time but painful...

Later on however it produces
a harvest of righteousness and peace,
for those who have been trained by it,
no discipline seems pleasant at the time but painful...

Make level paths for your feet
make level paths for your feet
straighten out your feeble mind
so He can make it heal, so He can make it heal,
strengthen up your feeble arms,
strengthen up your weakened knees,
fix your mind on things above
above where we are free
above where we will be...

For those who have been trained by it,
no discipline seems pleasant at the time but painful.

My little foray into pain-spiced discipline this morning was an outdoor run through gently-falling snowflakes with Joy in the jogging-stroller. I love how smoothly jogging-strollers ride in comparison to regular strollers. I also succeeded in picking a 5K route that didn't have any glare ice. Alas, my avoidance of glare ice sent me up a killer hill. Did I mention I had Joy in the stroller, all 40 pounds of her? Puff, pant, gasp, snuffle. Also I'm fighting a cold (JoyDad has a version of the cold that's been kicking his backside for several days now.) Plus Joy woke up at 2:30 this morning, and so did we. All this combined to add about a minute and a half to my running time. But I did run-jog-fasterthanawalk the whole course.

However... while I'm not quite ready to claim a harvest of righteousness and peace from all this running discipline, I have been doing better at fighting colds this winter. And keeping the deep-blue days of the deep-winter season at bay. My weakened knees even feel pretty good. I will not feel at all feeble when I take my bike commute back up this spring -- already the days are almost long enough for it again, if we get the right combination of good temperatures and good snow-clearing.

I'd have done better to pick a level path for my feet, though.

The Rhythm of Life

Oh the rhythm of life is a powerful beat,
Puts a tingle in your fingers and a tingle in your feet,
Rhythm on the inside, rhythm on the street,
the rhythm of life is a powerful beat.

I think I may have only heard this song once, performed by a highschool group back when I was a gradeschooler, but it was so catchy that it has stayed with me all this time.

Been thinking a lot about rhythm lately. One intriguing place that rhythm has broken into the routine is something that Joy's occupational therapist has begun to try with her. Here's how she put it:

I was experimenting some with rhythm... I want to address some of that internal rhythm for attention and regulation. So completing activities to a rhythm or song for attention and focus. Giving movement and input (deep pressure, massage or tapping) to a rhythm for that internal self-regulation.

This has possibilities! I think it resonates particularly well for me at this point with my running. Yes, I'm still at it, having completed the Couch to 5K training just before Christmas, still running three times a week. When I get outside (on weekends if the weather isn't too rough) I can keep going for 5K without too much internal struggle. With hills and wind and some ice, I managed to do a 5K route in 34 1/2 minutes last Friday.

At home on the treadmill, though, I need help and I usually do shorter (2-mile) runs. If I don't have music to listen to, it's TOO boring to even get through that. Two favorite tapes to listen to (yes, old technology, I know) have been Footloose and a tape of the Radiators from New Orleans. I find that when the beat of the song matches my running pace, my energy level goes way up.

What songs match my pace, right now?

Well, let's see. On the Radiators tape, there's "Walking Backwards With Our Eyes Closed." The line repeats again and again. It's kind of like -- life with Joy. Feels like we do an awful lot of walking backwards with our eyes closed sometimes! Have to trust that we're going in good directions, with help from above.

On the Footloose tape, the best run-pacing song is "Heaven Helps the Man" by Kenny Loggins. (What's with all this "man" stuff -- medicine man, heaven helps the man, etc? Oh well.) Once again, my thoughts are drawn to my daughter:

Looking into your eyes I know I'm right
If there's anything worth my love it's worth the fight...

Heaven helps the man who fights his fear
Love's the only thing that keeps me here
You're the reason that I'm hanging on
My heart's staying where my heart belongs

Yes. There are surely fears to conquer, but love keeps us hanging in there. Joyfully.

So, are all my running songs Joy-related? Uh, turns out... not quite.

How about another one off the Footloose album, "The Girl Gets Around"? Let's see, that one must be... about running. Yeah, that's it. See, I get around faster because I'm running...

Oh, and the one from the Radiators, "The Nasty Boogie Woogie."

Nope, can't spin that one. Other than... life has its rhythms. What can I say?

Speaking of which, turns out the original version of the Rhythm of Life song comes from the Bob Fosse musical Sweet Charity and has slightly different lyrics from the childrens-choir re-write:

And the rhythm of life is a powerful beat,
Puts a tingle in your fingers and a tingle in your feet,
Rhythm in your bedroom, rhythm in the street,
Yes, the rhythm of life is a powerful beat!

Heh.

By the way, yesterday's treadmill entailed a 5K in 33:31. A good sign, since I've signed up for a race in 2 1/2 weeks, on Valentine's Day! Also running will be the friend from church that I told about the Couch to 5K thing back at Women's Retreat this fall. And her husband, and her sons! This will be so much fun! Fingers crossed for reasonable weather!

Product Hits and Misses, Homemade Edition

It's been a while since I've done one of these, but I've got a couple of goodies to share.

The first one is a huge hit, and has been rather a long time coming. It's a 3-ring binder full of laminated photos, for picture communication. I first talked about laminating photos back in October, in a post called "Choices". That's when we started using photos of everyday objects (mostly food and playthings) to offer an alternative to spoken language for labeling things. We've been moving toward having Joy be able to select and give someone a photo card as a form of request. But for several months, we just had the cards in loose piles at home. At daycare each card had a hole-punch in the corner, so they could be threaded onto a ring and kept together in that way.

The photo communication has now become a more central part of Joy's formal House Blend goals, so over the holiday I put the binder together. It's a velcro-and-manila-folder project (see Both Hands and a Flashlight for some games based on a similar concept!) Each laminated photo gets a little square of stick-on velcro tape (the soft fuzzy side so it doesn't stick to carpet and clothes) on the back. Each page of the binder can hold four photos on a side, so four corresponding velcro bits (the prickery-burr side).

The binder pages are organized by categories: Food & Drink, Upstairs Toys, Downstairs Toys, Outdoor Toys. Next addition will be an Actions section: jumping, tickling, pillow squish, etc.

Then the front of the binder has two strips of the burr-side velcro. Here's how it looks at snack time:


As you can see, there's a lineup of three cards stuck to the binder, corresponding to the three parts of snack that are sitting before her: bunny crackers, drink, and raisins. To get a small helping of any of the three, Joy has to grab the corresponding photo, rip it off the velcro, and hand it to an adult. At the beginning of snack, I also use it with just two photos to give her a choice of which grain-option to have: bunny crackers or pretzels? Kix or Cheerios? Then once she's made that choice, we go to the three-card setup.

Joy is really shining with using the photos, particularly at snack-time. She does love her food, and will make requests again and again. Often we have to cut her off when the number of helpings gets ridiculous, which sometimes even prompts her to make a "more" sign or say a "mah" word! (Yes, we do reward her for that. One final helping before the snack goes away for real.)

I made a similar binder for daycare, velcro-ing all the photos from the rings into a binder so she'd have similar structure for photo choices. This, so far, has been a bit of a miss, in that the photos-on-a-ring were such a useful handy way of using the photos (at least for labelling), that they miss it now that I've slapped all the photos in the binder! Perhaps a duplicate set of photos is in order, at least for the most useful of the ring photos.

======

Next up is a common kiddy toy, cardboard box-blocks, that we got handed down to us from a friend. Joy is still learning the whole tower-stacking thing, so these were a neat find. What makes them "home-made" was a suggestion from Joy's lead therapist, who observed that the boxes can be opened up, and if you fill them with some weight, you can get a bit more sensory bang out of them.

So here's what we did.


There are two usable compartments within each block. We filled each compartment with a ziplock sandwich baggie full of wood fuel-stove pellets, two eight-ounce baggies per block for a finished product with an extra pound of weight in a block. Rose helped me fill the baggies and weigh them on a kitchen food-scale. We had the wood-stove pellets easily available because we use them in the bunny litterboxes, but dried pinto beans or gravel or such would work well too.


Hmmm. Have I ever posted about bunnies? I may need to do that at some point.

I am a Medicine Mama

I am a medicine man, I do a medicine dance
I am a medicine man, I sing a medicine chant
I am a medicine man, I have a medicine tale
I am a medicine man, I walk a medicine trail

-- Bobby McFerrin

Couldn't figure a way to embed the song as background music for the post, but it's available for a free listen at this link (click the play button on the widget on the right of the page you come to).

Medicine. Hoo boy, do we got medicine at this house. Here's the dosing that I'm responsible for:

• For JoyMama first thing in the morning: swallow 3 pills, inhale one dose.
  


• For Joy at breakfast: one oral syringe, four chewable pills, one powdered dose mixed in yogurt.
  


• For Rose at breakfast: one oral syringe
  


• For Joy at lunch: one oral syringe (Lynda administers this on daycare days)
  


• For Rose at lunch: one capsule mixed into yogurt (on school days we move this to breakfast or dinner)
  


• For Rose at dinner: one oral syringe
  


• For Joy half an hour before bedtime: one oral syringe, four chewable tablets, three tablets crushed and mixed with jam.
  


• For JoyMama at bedtime: Inhale one dose.

It's a lot to keep track of, and I imagine some of you have meds routines that are more complicated still than this!

Unfortunately Rose & Joy's meds don't lend themselves to pre-loading into those daily pill-boxes, since so much is powder and liquid.

Fortunately all the Rose dosing will drop out in a couple of days -- she's getting antibiotics for strep, and acidophilus to try and keep some good bugs in her. (As an entomologist-in-training, she loves the terminology "good bugs / bad bugs" though she knows we're not really talking about insects. After all, her doses don't have an exoskeleton, six legs, and three body parts...)

You know, this recent series of posts reminds me of one of my fascinations as a grade-schooler. I used to love the anatomy pages in our Compton's Encyclopedia set (I think that was the one; we acquired a more up-to-date Collier's set later on, if I recall correctly. As if that matters, other than to a librarian!) Instead of the regular paper, these were transparent overlays, building a human being from the back to the front. Each overlay added more organs and bones and whatnot, all with terminology and descriptions. I remember that's how I learned the word "esophagus," because I had to ask a parent how to pronounce it!

Anyway. It strikes me that with these recent posts, I'm building an anatomy of our days, one overlay at a time. I've still got a few more overlays to go before the post of what a House Blend session looks like. This meds-dosage overlay doesn't apply to that, but does of course apply to the anatomy of the daily routine here.

Joy's Sensory Regulation Activities

In a super-secret yet eminently accessible place (by the cookbooks, but don't tell anyone!) live the Barista Binders -- two informational & record-keeping binders used by the intensive autism therapy staff from Agency 2. Schedule, hours, treatment goals, daily data-sheets, team meeting notes, it's all there.

Also in those binders are listed some suggested activities and tools for sensory regulation, which make up a substantial component of each session. Another term for this would be "sensory diet." Here are some of the favorites for Joy's toolkit/menu:

Heavy Work - Body

• tunnel crawling


• foot pushes


• snow play


• push & pull loaded crate or laundry basket


• stair climbing


• weighted vest


• ankle weights


• weighted blanket

Hand Work & Fidgets

• play doh


• Insta-Snow


• bucket-o-beans (last resort, it's an addictive activity!)

Deep Pressure

• crash pillow


• pillow squishes


• bear hugs


• crash on couch


• head squeezes


• Joy burrito (wrap & squish in a blanket, she also gets the work of wriggling free)

Movement

• songs with movement ("Row Your Boat" is a big fave right now)


• jumping (if you hold her hands or under her arms, Joy can jump to the moon!)


• trampoline


• blanket rides


• blanket swing


• running/chase ("I'm gonna get you!")


• tickles

Oral Motor

• chewy toys


• drink from crazy-straw sippy

Things could be categorized in other ways (is jumping movement or heavy work? Yes!) but you get the idea.

I had one of the line therapists tell me last night something along the lines of "When we start the session with some jumping, it helps so much."

What are some of the favorites at your house, if this is part of your life too?

My Sense of Sensory Issues

I don't remember where I first heard the outlines of the following illustration, but I know that Joy's senior barista/therapist used it recently at a team meeting and I've used it myself in a presentation to my church! It introduces the concept of sensory regulation:

Think of a crowd of people sitting listening to a lecture. Think of what you do at a lecture. Does everyone sit perfectly still and straight the whole time? Heck no. Some have their legs crossed and are bouncing their foot. Some twiddle fingers or play with their hair. Some doodle. Some gently shift their body back and forth. These are examples of the kind of sensory regulation we do every day. We unconsciously adjust our bodies to enable us to focus and learn.

Some people (like Joy, like many others on the autism spectrum, though you don't need to be on the spectrum to have sensory issues), have sensory needs and sensitivities that are so great that they can't just unconsciously jiggle a little to get to the point that they can be focused enough to learn, let alone get out of just an overall overwhelmedness. Some have super-sensitivities to noise or fluorescent light or texture or touch (like the wrong kind of fabric or seams in the clothes!), others crave more sensory input than their surroundings can automatically provide, often it's some sort of combination.

I recently read an anecdote by an autism consultant, who has autism herself, about throwing herself against the wall to get the input she needed to keep her sensory circuits from blowing into mass confusion. Author/scientist/autist Temple Grandin reported creating a kind of contraption for herself that would smush her between two boards to give her full-body pressure. Cale over at Spectrum Siblings posted recently about consistencies he can't tolerate. Anecdotal evidence abounds!

On the professional side, the concept of sensory integration disorder was introduced by an occupational therapist in the 1970s, and Joy's occupational therapists have been the ones with the expertise to guide (can I use the word prescribe?) her sensory interventions. Examples: How heavy should her weighted blanket be? How long can she wear her weighted vest before it begins to be ineffective? Would the Wilbarger brushing protocol be appropriate to ease self-biting problems?

So how is it that, as I've reported a couple of times now, the intake expert at Agency 1 of the two local intensive-autism-service-providers told us that Agency 1 didn't believe in sensory integration dysfunction?

Well, when I want a skeptical view of treatments or diagnoses that may not be generally accepted, there are two websites I visit first. One is Respectful Insolence, blogged by a surgeon/scientist pseudonymously known as Orac, who takes great delight in dissecting all manner of what he calls "woo." ("Woo" might be described as an antonym of "evidence-based.") The other is a site called Quackwatch ("Your Guide to Quackery, Health Fraud, and Intelligent Decisions"), also operated by an MD, a collection of information about potentially-dubious healthcare information.

I didn't find anything about sensory issues at Respectful Insolence -- a good sign! Quackwatch, however, has an interesting piece called "Why 'Sensory Integration Disorder' Is a Dubious Diagnosis" by Peter L. Heilbroner, MD, PhD.

"Few pediatric neurologists believe that SID is a real diagnostic entity," the article claims. Indeed, it is not a DSM diagnosis, and Tim commented a few posts ago that it seems to be losing the bid to make it into the DSM-V. Instead, the author goes on, "many neurologists...feel that 'sensory symptoms' are a nonspecific indicator of neurodevelopmental immaturity." (In other words, people grow out of it, therapy or no.) "Given the fact that few (if any) adult patients have sensory integration disorder..." Hmmm.

I think the big kicker is this one: "A review of the literature on sensory integration disorder reveals mostly poorly designed studies and flawed methodology."

You'll encounter a related caution at the site Sensory-Processing-Disorder.com, a sprawling site written by an occupational therapist named Michelle, who also runs an Amazon.com site with a fine selection of sensory-related books and products. (As a librarian and critical consumer of information, I'd have liked to know her full name and more specific degree/credentials, though since she talks about her daughter, I can see why she might have chosen to go by first name alone.) On a page called Is SPD a Real Diagnosis? she says:

One of the most frustrating things about Sensory Processing Disorders (Sensory Integration Dysfunction) is that there has not YET been enough significant, massive, SPD research through controlled studies to quantify, prove, or predict the symptoms and life course of this disorder (in the eyes of the medical community).

If you click the SPD Research link in the quote, you get a list of links to SPD-related articles and bibliographies of which she claims, "If you want to know... Is SPD Real? This should 'prove it'." Unfortunately the list of links is not a critical bibliography, and nothing at all like a Cochrane Review (a huge name in evidence-based medicine; SID/SPD has not been a subject of review there. Yet?) I think she's right that the growing mass of research will eventually get to the point where much more can be said with confidence about SID/SPD. However, a mass of links does not a scientifically-valid argument make. Anti-vaccine sites have their lists of links too...

Barbara at TherExtras ran an interesting series last fall about sensory integration. I was particularly struck by her account of a seminar she attended, where two very likeable presenters served up a program on sensory integration that had distinct overtones of "woo," backed by an outdated bibliography. Alas. Not that such a seminar invalidates anything about sensory integration, but it doesn't exactly advance the cause either.

Well. I'm running at the keyboard here, and this is perhaps not one of my better organized posts, but I'll go ahead and put it up anyway. Next up will be examples of the sensory interventions in the toolkit that we're using for Joy! See, skepticism notwithstanding, we do believe in sensory issues, and their centrality to what will help our Joy.

Role-Playing Rose

Just a few minutes ago, I had the privilege of overhearing Rose play with two American Girls dolls, while I was working in the kitchen and Joy was napping (or supposed to be napping, anyway).

The blonde doll, Kirsten, had "a disability of walking." Rose was her older sister. The brunette Molly was her friend.

Rose was providing a low-voiced running commentary on their efforts to problem-solve Kirsten's mobility.

"Now, grab on to this. That's good! That's good! Now, what will we do next?"

"Well, THAT didn't work..."

"OK, I know what to try. How about holding on here?

She came to me to share her pride and delight when Kirsten had succeeded in maneuvering half-way across the room.

She gets it, doesn't she?!

The Baristas

Me and my extended metaphors.

Suddenly I find myself riffing on how if I'm going to use the name "House Blend" for the relationship-based therapy served up by Agency 2, the staff must be the baristas. Right? It's actually not such a bad analogy. They're the ones actually assembling and serving it up on a day to day basis. For the benefit of our (lone) male line therapist, I also hasten to point out that the World Barista Champion of 2008 is a dude -- the feminine-sounding ending on the word does not imply an all-female staff, though in our case it's pretty darn close.

Here's how Joy's team is structured.

At the head of the team is the Lead Therapist, a professional (degreed) clinician who is responsible for Joy's treatment plan. We were fortunate that she was also the therapist with whom we did the out-of-pocket work while we were waiting for Joy to pop to the top of the waiting list. She also keeps tabs on Joy through this blog and the Yahoo! Group that Lynda and the school-district therapists and I use to exchange reports. She supervises the Senior Therapist and attends team meetings every other month (I think) and also periodically does a session directly with Joy.

Next in the chain is the Senior Therapist. She supervises and helps train the Line Therapists, runs the twice-monthly team meetings, and does a session with Joy just about every week. I believe the required degree for this position is a bachelor's degree, though in a university town people's qualifications often exceed the minimum (like the taxi drivers with PhD's kind of thing). Lots of training & experience go into this one too!

Then the baristas who are behind the counter each and every day -- the Line Therapists. We have five of them. The required qualification is a high school diploma, though I believe all of our line therapists exceed that (we even have a speech-therapist-in-training who is most of the way through her graduate work!) Then there's some training at the Agency 2 office, and then 30 hours of supervised hands-on training, and then the line therapist can go solo.

The standard House Blend session is two hours long, with the final 15 minutes devoted to report-writing. Our fully-staffed weekly schedule involves 12 sessions with Line Therapists, or 24 hours a week, not counting any additional visits from Senior or Lead Therapist. Two sessions per week are at daycare, the rest are at home. Then twice a month we have a one-hour team meeting. For all of these hours, there must be a parent or suitable stand-in adult caregiver present.

When you figure that we also have four one-hour visits from school-district therapists (one occupational therapy, one speech therapy, two special-educator, who also sits in on Agency 2 team meetings from time to time)... Our schedule is just nuts. And Joy's getting bombarded with one-on-one attention.

We have an excellent team going right now. Hiring has been an issue, and it took longer than the state likes to see to get the team up to full strength -- technically we are responsible to get in 80 hours per month, and that didn't happen until December, though the team started assembling in July. We had lots of early washouts, including a couple of hires who never even darkened our door, one who had overbooked herself and bowed out while in training, another who left for a job more squarely in her field after having completed training.

I enjoy getting acquainted with our team members. Despite the official warnings in the paperwork about professional boundaries, I find that we share nuggets of our lives in conversation just because we do spend so much time together. So we've got the therapist who actually has worked as a Starbucks barista, and the one who has handbells in common with me and rock-band experience in common with JoyDad, and the one who used to sell jewelry in the parking lot at Grateful Dead shows, and the one who's working on a double-major in mathematics and art... It's really a delightful group. I hate the thought of the inevitable graduations and other turnover, but I guess that's part of the way things go.

Examples of Joy's goals, and the contours of a typical session, I'll save for future posts.

A final word about terminology, though. My career, such as it is, is in the field of librarianship. I have the master's degree and, as such, am qualified to work as a librarian. It makes degreed librarians all kinds of cranky when people refer to the high-schooler behind the check-out desk as a "librarian." It strikes me that there is something of the same dynamic with the word "therapist." Professionals who have worked long and hard for the various therapy degrees and credentials tend, I think, to shudder when the term "therapist" is applied to folks like Agency 2 line therapists. But... that's the terminology that Agency 2 uses, so that's how I'm going to phrase it. No disrespect to higher levels of credentialing is meant thereby. Meanwhile, the line therapists are the ones on the front lines serving up the House Blend, and we very much appreciate all that they are doing for Joy, and in relationship with Joy.

House Blend

Way back in the first month of this blog (July 2008, in case anyone's counting), I wrote about the challenges of decision-making regarding the overwhelming array of autism therapies. The post called How Can You Possibly Choose? has weathered well over the past 6 months -- still worth reading for background on our thinking.

Here in Wisconsin, where the state funds intensive-level interpersonal autism therapy, we had some parameters on our choices for what agencies and therapies were available under that program. In our county there are two choices, which I dubbed Agency 1 and Agency 2. At Agency 1, the agency's founder trained with Ivar Lovaas, the grand-daddy of Applied Behavior Analysis (ABA). Agency 2 takes a more relationship-based approach, incorporating principles of DIR/Floortime, the work of Dr. James MacDonald (Communicating Partners), and behavioral principles as well. We'd had a hunch that Agency 2's approach, focusing on relationships, might be the better match for Joy, but we knew that many people get excellent results with ABA. What really sealed the deal in favor of Agency 2 was when we discovered that Agency 1's version of ABA didn't "believe" in sensory issues, while Agency 2 makes them an integral part of their program.

Joy's sensory issues are written all over her -- one of her school-district therapists called her "THE most sensory-seeking child I've ever seen." We couldn't possibly go with a program that didn't "believe" in such a major component of our child's make-up.

So our hard-core work with Agency 2 got underway this July (after 15 months on the dreaded waiting list, which meant that the program actually started 19 months after her diagnosis, though we did do some introductory work out-of-pocket in fall 2007/winter 2008). I'm not quite sure why I haven't been writing about it more, as the one-on-one hours have gradually swelled to our target schedule of 24 hours per week. But at any rate, suddenly I feel like I have a lot to say about it, something that will span a number of posts in introduction and then will presumably weave its way through my posts as we move along.

One challenge has been trying to get my mind around how to talk about Agency 2's program. Interestingly enough, they really don't have a name for their protocol, as far as I can tell. People tend to refer to it by the organization's name, as in "Agency 2 Therapy." That doesn't flow trippingly off the tongue for me; for the purposes of Elvis Sightings, I hereby dub the protocol "House Blend."

Mama Mara recently introduced me to a new blog called Spectrum Siblings, a most excellent and prolific blog by a Cale, a college sophomore on the spectrum (Asperger's) who also has an older brother with autism. He has been doing a "Theory Thursday" series with explorations of neurodiversity and how different therapies can intersect with a neurodiversity outlook. One of his opinions that leaped out at me:

[T]he therapy should follow the child’s interest. The best is a mix of DIR (to be discussed next week), and ABA, as it allows for the child and therapist’s goals to be accomplished.

Ooo! House Blend, House Blend!

So, here's a little bit of an introduction to what House Blend looks like.

The tag line on the Program Guide for House Blend staff (the baristas?) is:

Learning to Interact......Interacting to Learn

Much depends on the partnerships between Joy and her staff.

The program sets and works toward goals in five areas: Regulation (there's the sensory stuff, right at the top of the pops!), communication, relationships, learning, and daily living. There's a definite hierarchy in these areas. The theory is that if you're not regulated, you won't be able to communicate well; relationships depend on communication; and the partner relationships are key to guiding learning.

Right now, the goals for Joy are written in the first three of the areas. The first phase of the program, basically the first year of three, is called Beginning Relationships. The first weeks (months) of the program were all about getting acquainted and getting our team up to speed. Joy accepts new people with relative ease, but the building of the team was a longer-than-expected process. However, operating at full-strength now, we've been able to work on the first goals and revise/expand them as Joy meets the benchmarks. There has been forward movement, absolutely. One of the documents we received from Agency 2 early in the process, which I can't lay my hands on right now for some reason, described the expected progress as an upward spiral. I think that may be from Greenspan?

Anyway, there are lots of specifics about communication strategies that therapists (and parents) are to use with Joy, and how the sessions are structured, and how to take data. I'll do an upcoming post or two on the communication, which is where Jim MacDonald's work comes in, and also a post on Joy's specific goals and what progress we've seen. And probably another post on a typical session. There's much to write about!

Next post, though, I'll talk about the House Blend Baristas, or how Joy's Agency 2 therapy is staffed.

By the way -- Mama Mara may wish to visit the How Can You Possibly Choose link in light of one of her recent posts. The framing story of my post (involving Rose) has something in common with recent experiences in her household...

Shameless Self-Congratulation

Way back in the Dark Ages high school I had an excellent, quirky Chemistry teacher. One of his tricks was suddenly bestowing a coveted award that could be earned at any time for clever thinking or a job well done. The award was a mimeographed certificate known as an "Attagirl" or "Attaboy." If you ever collected 5 of them (a rare occurrence indeed), you could trade them in for the über-certificate, "One Great Big Pat on the Back."

Well, despite pride being one of the seven deadly sins, I'm going to award myself an Attagirl, based on two bits of advice from past online conversations that I picked up and put into action on Joy's behalf. And I'll rationalize the shameless self-congratulation because, hey, I'm sharing the good ideas with all of you, and that has to count for something! Right?

Bit of advice #1 was something we did last year: take a photo of your child to the IEP meeting (the summit at which you put together the Individualized Education Program/Plan that shapes what school-district services your child will receive in the coming year.) Since Joy is too young to attend such meetings, and we were dealing with administrators who had never met her, I glommed onto that advice as a way to give her a physical presence at the proceedings. We were very pleased with the outcome of the meeting and how it shaped the summer and this school year so far, and that photo surely helped set that stage.

Bit of advice #2 was something that I ran across before either Rose or Joy had started with the school district. The advice was to become a "presence" at your child's school as early as possible, so that you are not a stranger to the powers-that-be when your kiddo with all her unique needs comes down the pike. Since Rose started school first, I've been able to volunteer on her behalf and also position myself as an already-valued part of the community as Joy moves toward kindergarten. This year I help kids in Rose's classroom with their reading, and volunteer in the school library as well. I also designed and maintain the PTA website, which brought me to the attention of the principal, and made me a known quantity to be able to raise concerns about last year's poor snow-removal on the city sidewalks across from the school (got it onto the PTA board agenda, people who knew people talked to people who get things done, and there's definitely been improvement!)

Now that 2008 has rolled over into 2009, it's time to think IEP again. Joy will turn 5 at the end of May, putting her at kindergarten age for next fall, but we're leaning pretty heavily toward waiting an extra year. Once she starts attending school, it becomes ridiculously difficult to arrange a full schedule for her intensive autism therapy, which cannot overlap with school hours. (Gah. Don't get me started... that'll be a rant for another post.) Since she's got an almost-summer birthday, she wouldn't be that much older than her classmates with early-fall birthdays anyway.

So, what's the process for delaying kindergarten for Joy? First, I needed to contact the administrator who presided over last April's IEP meeting -- who surely remembers us pretty clearly, in part because it's apparently so unusual to bring a framed photo to the meeting around here. The photo of Joy was a memorable one, riding on the zoo carousel and beaming ear to ear. Then that administrator sets up a meeting for us with the school principal -- you know, the guy who already knows me as a good person to work with because of the volunteering and PTA stuff...

Maybe it's premature to do the "shameless self-congratulation" dance, since the meeting hasn't even been scheduled yet! But, having put into practice those two bits of wisdom from other special-needs parents online, I'm feeling so much better about even the prospect of how this process is supposed to go.

Attagirl, JoyMama!

In unrelated news, I also got some bloggy appreciation from my sister-in-law ARatM (short for Auntie Running-at-the-Mouth). I drew her name this year in the family holiday gift exchange, and my gift to her was a hand-embroidered running hat emblazoned with "RatM". Not only did she wear it for a race on New Year's Day, she changed her profile pic to show off her new gear. Check it out!

2009 WI Senate Bill 3

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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Hard to believe, but insurance coverage for autism is at the top of Wisconsin's 2009 legislative agenda!

Note: I've updated on this issue as of February 7.

When Joy was diagnosed with autism in December of 2006, we began to learn some unfortunate facts about developmental disability. One particularly disturbing issue we began to hear about was how health insurance often treats autism. As in... it generally doesn't, if the companies can at all help it.

One historic artifact is that health insurance has covered mental health issues only reluctantly, and to lesser degrees than physical health (as if they weren't related.) Since autism is technically a mental-health diagnosis, that puts it on the shaky side of insurance.

I should note here that our particular insurance policy has generally done very well for us. We have not been denied any physical care for Joy on account of her autism. We even got them to cover some speech and occupational therapy during the one summer when Joy was too old for the county's Birth-to-Three services, but the school district wouldn't pick her up because it wasn't September yet. They also covered follow-up visits to the developmentalist/autism-specialist who made the initial diagnosis. That was it for services directly aimed at the autism, however. We haven't even really tried to get anything else covered. And the horror stories are out there. I also hate to think of what would happen if we ever had to switch insurances...

Fortunately, we discovered, there's been a movement afoot nationwide among the states, to highlight autism as a condition that MUST be covered. There's a neat little map mash-up at Autism Bulletin that showed the situation in 2007; more states have signed autism-insurance mandates since then, including South Carolina whose legislature over-rode the governor's veto to make it so!

In Wisconsin, the governor and the state Senate were supportive. The motivator behind the proposed autism insurance legislation in Wisconsin was the state's intensive autism services, which Joy is receiving now. (I've got a whole list of posts on that to come; stay tuned!) Wisconsin has a lovely program via a Medicaid waiver that offers up to three years of intensive therapy for kids on the autism spectrum who are sufficiently disabled to qualify. The budget dictates how many children get into the program each year, alas, and the waiting list is out of control. Joy began receiving services a year and a half after her diagnosis, and you can believe we were not dragging our feet in trying to set it up! -- and the list has only grown since then. The budget strategy went, if only insurance would pick up at least part of that expense, we could stretch the state dollars further, serve more children, whittle down that waiting list. In the process, they could also help adults with autism who get slammed by insurance exclusions.

So we started advocating. We got friends and family to write letters, I attended a rally at the state Capitol and talked to staff in various legislators' offices, I even testified at a state Senate committee hearing on the measure, and got quoted by a couple of news organizations! Joy was so cute at the hearing. I started my testimony with her on my lap, but she started telling the legislators "bye-bye" before I got 30 seconds into my spiel!

Well, the measure dragged and dragged. First they tried to put it into the budget, a long contentious process and we set the record for late state budgets that session. Then it was introduced in the Senate, then the committee hearing, then the Assembly got a chance to drag its feet. Rumor was that there were enough votes in the Assembly to pass it (it passed the Senate with ease), but the Assembly leadership was dead-set against bringing it to the floor. Eventually they brought a substitute amendment that looked like it was going to throw state dollars at the waiting list, but that they knew wouldn't pass. And the issue was officially dead for the session. For timeline context, my testimony was in May 2007; the Assembly 11th-hour shenanigans that killed the bill for the session were in March 2008.

Since then, there's been an election, and it has changed the playing field considerably. Wisconsin now has the same party (Democrats) in the governorship and in the state Assembly and state Senate -- in other words, the Assembly majority changed hands.

The autism insurance bill was introduced in the state Senate this past week. It's Senate Bill 3, right at the top of the legislative agenda.

Elections matter!!

I do wonder whether the bill will make it through in its current form. It's pretty broad right now -- it speaks to autism, Aspergers, and PDD-NOS, and defines the therapies to be covered this way:

if the treatment is provided by a psychiatrist, a psychologist, a social worker who is certified or licensed to practice psychotherapy, a paraprofessional working under the supervision of any of those three types of providers, or a professional working under the supervision of an outpatient mental health clinic.

Definitely aimed at the ABA/DIR/etc. kinds of services that the Medicaid waiver covers. The bill also does not have a dollar-cap written in, as far as I can tell, the way some do (some states make insurance plans provide up to $X of ABA in a year, for example).

I think the loophole for our particular insurance and Joy's intensive services is going to be that the services Joy is receiving are not "in-network." I'm sure there will be plenty of other ways for insurance companies to limit their obligations. The real details and limitations of whatever passes will have to be hammered out in a rule-making process led by the state's insurance commissioner, which could take up to a year in itself. Meanwhile, who knows what will happen with the Obama administration's health-care initiatives! The system could look very different in a couple of years.

Still. This insurance-coverage approach is one that we support, and it's exciting to see it moving forward. After all, that's Wisconsin's motto: "Forward."

Sled Envy

This winter and last winter have had some pretty serious snowfall here. My Alaskan and Canadian readers may not be much impressed, but for us it set records, for the winter in 2007-2008 and for the month of December in 2008.

Getting Rose to and from school was a particular challenge last winter. Not that Rose doesn't cope with snow fairly well, but we always had Joy along too. Too big to carry, strollers are useless in the snow, had behavioral issues in early 2008 and didn't always care to slog along snowy sidewalks.

Other families were using sleds, especially for younger sibs. But that didn't work for us either, and I was envious. Joy wouldn't stay on a sled. Even on a downhill run, she'd ditch halfway through the ride. Trying to pull along a snowy road? Forget about it.

But this winter, I posted in December about our amazing family sledding outing. "Joy sticks to the sled like a little burr!" I wrote. So I decided to try the sled as a transportation device to get rose to school yesterday morning.

It worked like a charm. I was able to tow both girls on the sled about 2/3 of the way before we hit street & sidewalk that was too dry for sled (about a 10 minute endeavor). Joy kept on the sled, and kept on her mittens and boots no problem. Then I held her hand and we all walked the last third together. The way back was similar. Walked well, Joy alone on the sled this time, stayed on the sled and never lost so much as a mitten. She did great. Rose, on the other hand, complained bitterly about the cold once she had to get out of the sled and start walking, and told me she was so cold, she was gonna die. And it was all my fault because I didn't lay out her scarf for her (as if she had asked? and anyway, she had a hat and a hood). Can you say, "pre-teen"? At the age of almost seven, yikes!!

Guess I can say goodbye to the sled envy, at least unless/until we have any major switch-flipping in that area!

Speaking of switch-flipping, I'm now ready to declare that Joy did not have a Christmas regression this year, unlike the past two holiday seasons. If the switches go haywire tomorrow, we'd call it a New Year regression. But we made it through the holidays. Woohoo!

Joyful Autism

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

Here's how it starts:

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

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

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

Ugh.

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

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

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

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

"Joy"ful autism.

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

Like the Coo of a Dove

And the Grinch grabbed the tree, and he started to shove,
when he heard a small sound like the coo of a dove.
He turned around fast, and he saw a small Who!
Little Cindy-Lou Who, who was not more than two.

Joy has been making the sweetest little sounds lately. Lots of little dove-coos, single syllables on falling intonations:

Awww!
Oooo.
Gohhhh.
Gooooo!
Mmmmmm.

She'll say them to herself in her crib, or at meals, or to whatever toy she's carrying around -- dolls with yarn-hair or her new My Little Pony with its lovely stimmy mane. She's also been very snuggly, and the coos are simply divine when they accompany hugs and cuddles.

GrandmaJoy and GrandpaJ (he went for the conservative alias, though really he's quite a progressive guy!) have been beneficiaries of our little Who-daughter's cooing and cuddling. They've been struck by the many changes in Joy since their last visit half a year ago. That visit was fraught with seizures and fusses and Joy outrunning them down the hall at church. This time around, Joy has been cheerful and less distractible and has done a much better job of honoring boundaries. We can even leave the bathroom doors open to air out, unthinkable half a year ago!

Alas, the grandparents are leaving this morning, and we need to get back to the regular routine. Back to daycare, and school, and work, and early rising. We'll probably get all Grinchly and shove the tree back in its box sometime in the next couple of days, all shorn of its decorations. We hope that little Cindy-Lou Who will not be disillusioned. If she starts singing Wa-hoo-dor-ay, we'll be sure to let you know.

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I was mulling this post during the day yesterday, and was surprised at church in the evening after I'd dropped Joy off in the nursery, when one of my friends caught me in the hall and brought up the Grinch. "You know little Cindy Lou Who?" she said. I nodded, my head full of Joy. Well, she was thinking of one of my daughters, all right. But she made the comparison to Rose! I guess the sisters have more in common than I realize sometimes.

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Update: This morning Joy's special-educator from the school district worked with Joy and heard the coo-ing. Without having read the blog, she quoted the line "like the coo of a dove" and compared Joy to Cindy-Lou Who too! I think it's becoming unanimous.

A Small Slip-Up

Exciting times here at the Joy household. My dad and stepmom are here visiting for several days, and the girls are getting lots of grandparent attention.

Last night, though, we had a little bit of attention-wandering. Grandpa Needs-an-Alias and JoyDad were out purchasing pizza, GrandmaJoy (who actually does share a first-name with her grand-daughter!) was playing in a bedroom with Rose, I was swirling around in the kitchen getting ready for the meal, and Joy was quietly watching a video in the living room.

Too quietly.

I had left a basket of fruit unattended on the dining table, and she had snagged a banana.

We have not yet taught Joy to peel bananas.

She was consuming it anyway. Peel and all. She was more than half-way through by the time I caught her. Blecchhhhh!

At least she's not a picky eater, right?