An Idea Whose Time Has Come

A quote from one of Joy's daycare reports:

Potty: Sat on the potty after AM snack. Diaper was damp, so didn't think she would be able to go. But she sat. After a few minutes I asked her if she was all done. She looked away from me and within 30 seconds she was peeing. When she was done, she reached for the TP. Cool!

This quote was from April 2007. Joy was not yet three years old.

At age 6, she's still in diapers around the clock.

When it comes to toileting, the sliders and switches on Joy's mixer board (my favorite metaphor for her developmental pattern) have turned on, and then turned off again. As her words have repeatedly come and gone, so has her willingness to make beginning steps toward potty training.

It's been very hard to decide about making an all-out effort to get the toileting truly underway. I'd really been dreading any approach that involved panties and letting the accidents happen. I'd been rocked on my heels by the experience of datri over at Opposite Kids, whose Kayla was unswayed by an all-out four-day diaper-free marathon over the winter holidays.

One complicating factor for us is that most of the advice about toileting readiness for neurotypical kids has not been consistent with Joy's trajectory. Consider this list at BabyCenter.com:

• Can sit down quietly in one position for two to five minutes. [In our dreams!]
  
• Can pull his pants up and down. [With support - this one we've got]
  
• Dislikes the feeling of wearing a wet or dirty diaper. [Our sensory-seeker doesn't mind at all, might even like it]
  
• Shows interest in others' bathroom habits [Nope.]
  
• Gives a physical or verbal sign when he's having a bowel movement such as grunting, squatting, or telling you. [Oh, come on... you can tell when infants poop!]
  
• Demonstrates a desire for independence. [Hmmm... a little, maybe]
  
• Takes pride in his accomplishments. [Yes, but maybe not how they think]
  
• Isn't resistant to learning to use the toilet. [Totally off-and-on]
  
• Is in a generally cooperative stage, not a negative or contrary one. [Again, off and on. Those switches flip very fast.]
  
• Can follow simple instructions, such as "go get the toy." [Can, yes. Does? Maybe.]
  
• Understands the value of putting things where they belong. [In a few limited situations]
  
• Has words for urine and stool. [Not even.]
  
• Understands the physical signals that mean he has to go and can tell you before it happens or even hold it until he has time to get to the potty. [Only the one "kee" incident.]
  

The bits about being resistant/cooperative have been a big part of what's standing in the way about making a commitment to do anything more than sit potty in the evening before bath. For quite a while Joy was willing to sit on the pot and happily flip through a board-book or two. But then a few months ago she started physically resisting as soon as I would ask her to potty-sit -- and this kid can put up some powerful resistance, let me tell you!

Fortunately, Joy's intensive-therapy folks, Agency 2 (serving up their own House Blend of therapy combining behavioral and relationship principles), have a nicely flexible approach to toilet training.

What has come together in the past weeks has been a combination of readiness on the part of both Joy and her parents, and the willingness of Agency 2 and Joy's awesome-daycare-lady Lynda.

• Joy is often dry overnight.
  
• She's willing to drink a lot of water when we push it.
  
• She understands "first/then" and is willing to work for a relatively immediate promised reinforcer.
  
• Kindergarten is coming up and we want her to have this learning underway.
  
• Agency Two's training guidelines have the flexibility and willingness to "schedule train" without making the frustrating commitment to do a diaper-free boot camp approach.
  
• Lynda is happy to combine our goals for Joy with her daycare's standard potty-schedule routine

Following the Agency 2 recommendations (which are proprietary so I can't post the helpful document online, sorry!), we first did some thinking about desirable rewards that could be reserved for potty encounters, in a hierarchy of desirability. Then we spent several days after we got home from the lake trying to record the state of Joy's diaper every half hour. One important switch here was moving from having Joy in a onesie round the clock to wearing just T-shirts and elastic-waist pants. Onesies are delightful for preventing diaper-digging, but not so fine for moving toward toileting independence. The schedule-recording didn't actually reveal a lot in the way of pattern, but it did get us into a toileting schedule mindset, and pre-shadow for Joy that there was going to be more attention to diaper-related activities soon to come.

Then we sat down with our senior Agency 2 therapist and talked about initial goals, to get us and therapists and Lynda all on the same page. We decided on a schedule of a potty-run every 1.5 to 2 hours, in which Joy would help pull her pants down, clamber up on a footstool to sit on the toilet (with insert), sit for a nice slow count of ten, and then get a reward! Then she has to cooperate with re-diapering (generally standing up, at home anyway), pull up her pants, and work through a hand-washing routine.

We started on Saturday. So far, we have succeeded in getting through all the steps, including the ten-second-sit, every single time. As a side benefit, Joy is learning to count to ten, and is especially eager to fill in the "teh" when we get as far as nine. Sometimes she's in a mood to sit quite a while longer, though, if she's excited to play with her ribbon-reward or mylar-balloon-play reward.

And yesterday morning she woke up dry, was willing to play an interactive people game for a while after the count of ten -- and did a most excellent potty-pee.

I don't imagine this will be either quick or easy, and surely we'll be dealing with sliding switches for years to come. But finally it does feel like we're on our way.

Forward! (Autism Insurance in Wisconsin)

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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We did it, y'all!

On Monday, Wisconsin's Governor Jim Doyle signed the state budget into law, including a requirement for insurance companies in Wisconsin to cover autism-related treatments. Until now, insurers in this state have been free not to cover autism, and to deny any service that might be autism-related.

Intensive-level therapy for children with autism in Wisconsin has been provided through a Medicaid waiver program, whereby the state & the feds together fund up to three years of intensive therapy (20+ hours per week) with the possibility of a number of years of post-intensive therapy. The autism diagnosis plus a certain level of disability qualifies a child for the program, regardless of parental income (though families do pay a small monthly fee that depends on income). The state budgets for a certain number of new clients in this program each year -- lately that level has been set at 200 new kids a year.

Unfortunately, the need has been greater than the waiver program could handle. A waiting list formed, and grew. In Joy's case, the time lag between her diagnosis at the end of 2006 and when her number came up on the waiting list was 18 months, plus another month until the first therapy (so the agency could assemble a team). And the waiting list continued to grow.

This was the setting in which the autism-insurance movement swung into gear here a few years ago -- if insurers could be required to pay for these therapies, the Medicaid-waiver portion of the program could focus on the uninsured, and more children overall could receive treatment. The legislation ended up broader than just the needs of children, fortunately, also applying to autism-related treatment for adults.

It took lots of advocacy and meetings and lobbying and rallying, lots of maneuvering and persistence. And now the autism insurance requirement is law. Wahoo!! Big happy thank-you and cheers to everyone who helped bring this about!

So. What now?

Well, nothing will change immediately. The next step is for the Office of the Commissioner of Insurance (OCI) to hammer out the specific rules for the insurance companies to implement, based on the law. The timeline for them to do so is five months. Then the insurance companies have to issue their new plans based on the rules. For state workers like me & JoyDad, the new plans should go into effect at the start of 2010.

Coverage must be at least $50,000 for intensive services (evidence-based behavioral therapy) per year, $25,000 per year for post-intensive (i.e. anything afterward, still must be evidence-based, so no coverage requirement for such things as hyperbarics and certain biomedical interventions).

As I understand it, the hope for how this is going to go is that the insurance companies will contract out the providing of the therapies to the agencies that are currently providing them under the waiver program.

I was initially concerned about a couple of things for our particular situation. One is that our HMO has been very particular about not wanting to cover anything not offered by their particular network. However, since the HMOs haven't been covering the therapies, that means the clinics haven't been offering them, which means they would have to totally start from scratch in developing such therapy programs, staffing them, etc. Contracting it out should be a much more attractive option, at least initially! (Conversations are underway, or so I hear.)

Meanwhile, our own Agency Two (which provides the baristas that serve up Joy's House Blend therapy) has a PhD-level therapist on the committee that's helping to formulate the Insurance Commission rules. This eases my mind about another worry, which was that the language in the law about "evidence-based behavioral therapy" might be interpreted as code-speak for "Applied Behavioral Analysis as practiced in Lovaas-protocol discrete trial therapy". Which is the protocol provided by Agency 1, the service-provider that we... umm... decided against. However, therapies that have a more relationship-based focus can also claim a legitimate place under the behavioral-therapy umbrella, as they successfully did when decisions about the waiver program were being made. And Agency 2 is right in there to help make those decisions fall the right way when it comes to autism insurance in Wisconsin.

It's pretty clear that families who have insurance will be required to make the switch, and cannot choose to stay on the waiver program. I wonder if this will turn out to be a costly deal for families with high-deductible policies? I was also wondering if we'd still be able to keep Joy's medical assistance at all, which pays for the diapers that aren't covered by our HMO -- it seems that we can at least hope not to get kicked off that, since the determination of disability for Joy should still apply.

Ideally, if everything comes up as sweetly as possible, we'll be able to stay with Agency 2, keep MA, and lose the ridiculous waiver-program rule that restricts the therapies to the home environment, so that perhaps we'd be allowed to have therapists work at Joy's daycare (as Birth to 3 and school district therapists have no problem doing.) We shall see. No guarantees on any one of those hopes, at this point.

There's a lot left to be worked out. And after the rules are in place, and the new insurance plans based on those rules take effect, I imagine things will get very hairy for a while as the autism-therapy service providers have to quickly staff up for an influx of new insured-clients who were either previously sitting on the waiting list, or had given up on the state program altogether but now will want to take advantage of the insurance coverage. I also don't know how the state is going to count the "waiver slots" that open up when people like Joy move over onto insurance funding. Will "her" slot come open in addition to the 200 new ones for the new fiscal year, or will it be one of the 200, which the state parcels out at an average rate of about 4 per week?

For all of the potential drawbacks and questions, I have no question that this was the right thing to do. Ultimately, more people in Wisconsin, children and adults both, will get the autism-related treatment they need. It's good to have something to celebrate, in a very difficult budget.

As Wisconsin's state motto says: Forward!

The Eyes Have It

We had a great big Agency 2 team meeting at our home the other evening, that really brought home the magnitude of the plate-spinning we (I) are doing on Joy's behalf these days.

There were 11 people at the table:

• 4 House Blend baristas (including a brand-new one, we've had a spot of turnover)
  
• the House Blend senior therapist
  
• the House Blend lead therapist
  
• the county case manager
  
• the school-district team leader
  
• Lynda from daycare
  
• JoyDad
  
• JoyMama

It was a fine meeting, lots of positive Joy-stories and a good opportunity to get on the same page with some things that we're doing with her PECS photos and such. We sent a plate of on-sale, store-bought cookies around the table. I couldn't believe how appreciative everyone was. I guess people are too overwhelmed or don't think to do those little hostess-y, favorite-place things for their wonderful therapists?

The next day, JoyDad gave me an extra hug and thank-you for all the coordination I do to keep this whole show moving. (That would be what Maddy recently referred to as "wrap-around services," I believe.)

Hug appreciated! It's a crazy edifice we've built here, especially when you consider that this still isn't EVERYONE who is on Joy's team. We were missing one barista who had a conflict with the meeting time, and Joy also has a speech therapist and an occupational therapist with the school district who weren't involved with this meeting. Then there's the team at church, where she has two Sunday-school teachers and TEN different volunteers (one for Sunday school and another for worship, a different pair every week of the month). One of those volunteers did the original recruiting and scheduling, which I appreciate deeply but which does not relieve me of the responsibility to let the right people know when we'll be missing a Sunday, for example. In a similar vein, the Senior therapist is in charge of scheduling the House Blend barista sessions, but I'm the one who has to pick up the phone and go scrambling if someone doesn't show up, not to mention making sure that either JoyDad or I will be in the house during the sessions!

And then there's the primary care pediatrician, and the pediatric neurologist, most excellent partners indeed.

And then any other specialists as needed...

Which brings me to our latest new wrinkle. JoyDad has been noticing for some time that Joy's eyes don't always seem to be tracking well together. I don't see it as much as he does (I think mostly I don't want to know, LA LA LA LA....) but eventually even I had to admit it. I did check informally with her neurologist to confirm that it didn't sound seizure-ish, but rather strabismus-ish.

Here's why I don't want to know. When Joy was diagnosed with linear nevus sebaceous syndrome (LNSS), we went through a round of specialist visits to check out some of the things associated with the syndrome. One of those "things" is ocular abnormalities. So we went to a pediatric opthalmologist in September 2007.

That eye-check visit was THE WORST clinic experience I've ever had with Joy. And this is a girl who has had 3 plastic surgeries under general anesthesia, a sedated MRI, a 4-hour video EEG, the list goes on and on. We'd arrived on time for the eye-check and ended up waiting for nearly an hour to see the doctor. The waiting room was crowded and noisy and under construction. We went through all the snacks and toys I'd brought along in the first 30 minutes. Then Joy had a seizure, if I'm remembering correctly, putting her in a foul foul mood. Then finally we got to see the doctor... for the FIRST time. Oh, hadn't anyone told us... they needed to dilate Joy's pupils. Please go back to the waiting room for another hour to give the drops time to work! I went back to reception and begged to be allowed to go home and come back, just a 5 minute drive. Well, OK, they finally agreed, but you have to be back in 45 minutes to be sure you don't miss the next round with the doctor. So we made it back in 45 minutes... and then waited ANOTHER 40 minutes, Joy with wide wide pupils and refusing to wear anything like sunglasses on her face. Joy and I were both basket cases by the time we saw the doctor again. The doctor was barely able to catch a quick peek into those poor sensory-overloaded dilated eyes, and in that quick peek didn't see anything worrisome.

Alas, strabismus is on the list of ocular abnormalities that can be part of LNSS. (And associated with autism too, I think maybe?)

So I dragged and dragged my feet about contacting Joy's pediatric office this time, but finally eventually did, telling my whole sad story about why I was really really hating the idea of an eye appointment. I didn't get to talk to the pediatrician himself, but nurse who called back told me that he'd recommended a pediatric opthalmologist who happened to be the same one we'd seen before. Not that I had anything against the doctor -- we really didn't get to interact with her much -- but she's still at the same clinic!! As my dear friend Mama Mara would say, GAAAAAH!

The nurse tried to talk me down. You just tell them your story, she said, tell them Joy's situation and that she CANNOT have another experience with those kind of waits in that kind of waiting room. If they give you any guff at all, talk to the clinic manager. Just don't take no for an answer. They'll take care of you if you escalate it properly.

Friday morning I heaved a big sigh and went to the phone. I spoke to a very nice appointment-desk lady who was very sympathetic. She put us in for a first-appointment-of-the-day so we'd get in quicker, with fewer people in the waiting room. If there's an exam room available that day, we can maybe wait there... while we wait for her eyes to dilate... no, ma'am, no way around that. This kind of appointment for this kind of concern, we've got to do the dilation. (GAAAH!)

She says she made all sorts of notes on our record, so we can have something to point to when the appointment actually comes around in July. I'll have to talk to whoever is in the clinic that day, though, about actually like getting them to honor any of this.

LA LA LA LA, I'm not going to think about this again till summer... unless you have some strabismus-related or waiting-room-related wisdom to share...

Isn't there a therapy schedule I can go coordinate somewhere, keep myself occupied?

Rules

So I had in mind to start this post with some cute collection of rules in our household, maybe some particularly quirky ones related to Joy's autism. But then I found a link from Quirky Mom to a most excellent post by One Sick Mother, who writes about Rules, Damn Rules, and Statistics. She structured the start of her post the way I'd hoped to do mine, only better than mine was coming out. So, go read hers, and remember her introduction. Then come back and finish mine.

One Sick Mother's well-deserved rant was about the rule-of-thumb kind of thing that physicians use in making their diagnoses, such as "Kids under the age of one don't tend to get strep." The problem comes when the rule becomes inflexible and exceptionless, morphing into "Kids under the age of one DON'T get strep." Her kiddo, of course, got to be Exhibit A of how the rule needed some flexibility.

I'm going to rant about discuss rules that need flexibility too. We've had several examples lately of program rules that are designed to prevent various kinds of inappropriate behavior. Such rules (when not administered with flexibility) can have unfortunate consequences for people who behave WELL.

Here are the examples:

1. From Agency 2: Parents and therapists must behave professionally toward each other at all times.


2. From Project Lifesaver: A year's supply of batteries and bands for the Project Lifesaver radio-tracking device may be administered by someone other than the sheriff's department. However, that "someone" may not be the caregiver of the person wearing the band.


3. From the state: Intensive autism therapy hours must happen in the home with an adult present in addition to the therapist. Preferably that adult should be a parent but really any adult over the age of 18 will do. Any therapy hours in other community settings must be applied for in advance, with detailed goals, and approval will only be for 3 months (at a time). You can't do more community hours than 25% of the therapy hours you have scheduled in the home.

We have encountered different levels of flexibility with these three rules.

The administration we've encountered with Rule 1 is, in my opinion, a beautiful example of how flexibility should be employed. In my post about the baristas, I had written,

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.

Our lead therapist read that and reassured me at our next meeting. She said she had no worries at all about barista-boundaries at our house, not even the informal data we've been collecting about who's got tattoos! (For the record, on our Agency 2 team there are 3 baristas with tattoos and one former Harley-rider. Which I think almost counts.) The rule, she explained, is there because not all families do have healthy boundaries, and sometimes parents will try to do things like glom on to a therapist as a Best Friend Forever or otherwise make unwelcome overtures. In which case -- it's very useful to have the rule to enforce.

Flexibility! The idea that not all families have to be punished because some families abuse privileges! Is that cool, or what?

So then we have the Project Lifesaver rule. I love the idea that the batteries and bands for the radio device don't need to be administered by the sheriff's department. It's been a hassle both for us and them to have us truck out to the station once a month or have them come to us to do the monthly battery replacement, plus it freaks out the neighbors to keep seeing squad cars in front of our home.

But. How silly is it that we have to burden someone ELSE with the battery storage and installation, and can't do it ourselves? We who can administer epilepsy meds three times per day for months, nay years, and never (OK, rarely) miss a dose?

Alas, there's no flexibility for the sheriff's department on this one. The rule comes down from Project Lifesaver Central and the deputies have to comply. So, we'll find a way to make it work. Our Wonder Woman daycare lady Lynda has agreed to get trained in how to do the monthly battery installation, and take delivery of the year's supply of batteries and bands. I'm sure we'll (wink) be able to work something out.

And then there's Rule 3. The biggie. The one from the state that says we have to have our House Blend therapy at home.

This rule was not always in place. At one point, therapy could happen at daycare as well as in the home. Lynda has experience with a previous kiddo at her daycare whose parents both worked full-time, and the child received oodles of House Blend hours at daycare. Which was great! Lynda's place is "therapy heaven," as one of our previous speech therapists put it. It's a home away from home, Lynda generally only has 6 kids at a time, she does a great job of participating in therapies and learning techniques and making suggestions and keeping everybody in the loop.

Unfortunately, there were apparently daycare situations that were not so ideal. Plus there came a budget crunch and a cutback in the number of hours that would be funded. Suddenly the pendulum swung crazily in the other direction. Therapy at daycare became suspect; therapy anywhere outside the home became suspect.

So, here's the ridiculous situation we find ourselves in. We have a glorious daycare setting, an ideal therapy setting, a home away from home. Joy's been going to this daycare for a couple of years, where she gets to be with peers and gets all the extra enrichment that Lynda's place offers.

If we'd had Joy at home alone with an au pair or a grandma or other one-on-one babysitter (anyone over the age of 18), the state wouldn't bat an eye at sending the therapists to that type of daycare setting. Which, in the case of a one-on-one paid provider, is generally more expensive than group daycare, which amounts to discrimination against working parents who don't have a lot of extra dollars to throw around.

But because we want her to have some therapy hours out of the home (four hours a week! only four, out of twenty-something!), we have to write these elaborate applications for three-month goals, with plans for how we're going to transition out at the end of those three months even if we're going to apply again. The most expensive member on our Agency 2 team (the lead therapist) is spending HOURS on these applications, plus daycare visits and documenting and generally going to bat for us.

Our first three months of therapy at daycare are winding up. The application for another round is in right now, though there have been several requests back from the state for further information and documentation. More administrative/clinician time and effort. For a lousy three more months, that might or might not be granted, and if granted, might be the last three months of House Blend therapy at daycare Joy gets to have.

Is this outrageous, or what?

Damn rules.

A House Blend Session

I think we've got enough layers in place for this to make some sense.

Besides, we had rather an amazing session with Joy's Tuesday-afternoon barista, that I'd like to share.

This was a 3pm-5pm afternoon session; the House Blend sessions are two hours long, minus 15 minutes at the end for record-keeping.

We have a consistent routine to begin and end the sessions, something that started all the way back with one of Joy's first Birth-to-Three therapists in 2006. At the beginning of the session comes a song to the tune of "Goodnight, Ladies" that goes:

Hello Joy,
Hello Joy,
Hello Joy,
It's time for us to play!

At the end of the session comes a song with three verses (I don't know a name for the tune): one verse for clapping hands, one for stomping feet, one for waving bye-bye. We have tiny reminder-notes taped to the outside and inside of the front door to help make sure that the songs happen.

The timing of the afternoon sessions is such that it generally starts with snack.


Joy has become a pro at yanking and handing over the photo cards. In fact, there was one snack over the weekend where we wanted to serve her something that wasn't on the photos, so we didn't bring the book out, and she was mildly cranky at not having her useful tool available! (She wasn't upset enough to refuse the tortilla chips... But I digress).

So after a suitable run of repeated photo requests for small servings of bunny-cracker and apple and milk, it was over to the living room for some jumps and pillow-squishes. I think that's all they had time for before our playdate guests arrived!

Since I have to be at home for these afternoon sessions, I'm no longer available to pick Rose up from school. Instead she comes home with neighborhood friends, a lovely family with a Rose-aged daughter and a 3-year-old son. Wonder of wonders, the mom is an early-childhood therapist (ST) herself and "gets" our situation without all the effort of edu-ma-cating on my part.

Joy's playdate was with the son. We'll call him J-Cat, short for Jellicle Cat because he is currently fascinated with the musical Cats. I could totally see him as Mr. Mistoffelees in the 2030 Broadway-revival...

As soon as boots and snowpants were shed, Rose and her pal disappeared into a back room, and J-Cat and his mom came to join Joy in the livingroom. J-Cat gravitated to a bag full of soft-blocks, so that became the first game. The barista held Joy between her legs, J-Cat sat between his mom's legs, and they took turns trying to toss a soft-block to the other. We used short verbal cues for things like "Joy's turn!" "Catch!" "Ready, set..." (wait for Joy to maybe chime in...) "GO!" And lots of encouragement & cheering & praise. Joy took a lot of support to play the game, but tolerated it -- like all things, up to a point.

When Joy started protesting, we cajoled her into "one more turn" and then it was her turn to pick the next game. The barista whipped a couple of toy photos onto the notebook, and Joy picked the Farm See-n-Say. So then the See-n-Say passed back and forth, with each kid getting a turn to pick an animal and pull the lever.


"Joy's turn!"
"Pull!"
"Duck... quack, quack."
"OK, J-Cat's turn!"
"Old McDonald had a farm, E-I-E-I-O!" (everybody claps along, Joy with support)

Joy didn't say much, but she made definite selections when offered choices, and took good turns with pulling or pushing or whatever the toy was. We played ring-stack, and blanket-pulls, and a train-toy, and another See-n-Say (an older bigger one with a stiffer lever, featuring baby zoo animals), and mini-trampoline jumping, and tunnel crawling. Joy needed some jump-breaks from time to time, while J-Cat needed some breaks to sing and dance for us.


After about an hour, both kids had hit their limit of such structured turn-taking. J-Cat wanted to play an imaginative game with his mom involving play-food, not one of Joy's strengths. So while they did that, somehow the very basic 3-hole shape-sorter came out as something for Joy & the barista to do.


What happened next was magical.

Joy pulled the lid off the shape-sorter, dumped the shapes, and started working to get the lid back on (accomplishing it with just a smidge of help.) The barista handed her one of the shapes, and Joy went right to work trying to get it in (again with just minimal help). Once she succeeded in getting the edges lined up correctly in the proper hole, she paused... and looked at the barista... and twinkled with anticipation.

The barista built the anticipation with a rising tone of "ahhh... ahhh..." (Imagine winding your way up to a theatrical sneeze.)

After teasing through several sounds of anticipation, Joy let the piece fall into the bucket, and began giggling like crazy, getting rewarded with praise and a tickle.

They did this again... and again... and again. They went through the entire bucketful two times, and then it was time for record keeping and the barista had to go fill in the binder. But Joy wasn't done. She went through another whole iteration of the bucket with me! And then I got up to go check on Rose, and Joy still wasn't ready to be done. She took the lid off once more all by herself, got out four pieces, got the lid back on, and ran the show all alone for two pieces' worth, looking all the way across the room to where I stood at the doorway, to make sure that I was watching and reacting appropriately.

After that we had to say goodbye to our guests, sing the ByeBye song after the report had been written so the barista could get out the door, and get ready for dinner.

There ya go. How's that for a House Blend session?

Right now we've got the playdate thing happening once a week. The rest of the sessions at our house are generally one-on-one, though Rose inserts herself into the action from time to time. Then twice a week we have sessions at Joy's daycare, with a very different dynamic among a roomful of peers (I'm never around to witness these since I'm always at work, but she's been able to do some neat things with support like join in on dress-up play.) At this point we've got 12 sessions on the schedule per week.

It's not always this awesome, by a long shot, but it's fun to share a good one!

By the way. J-Cat's mom is very pleased with these playdates too (besides being a phenomenal partner as the action is taking place). All this structured turn-taking practice is GREAT stuff for J-Cat as well as for Joy.

The Best Social-Communication Teacher

When we first got Joy evaluated and into the Birth to Three early intervention program, we had an interesting stroke of luck.

The program was short on speech therapists, didn't have one to assign to us right away, so gave us something else instead. I got a couple of months of weekly training in parental techniques to encourage communication, using the Hanen program and the book It Takes Two to Talk. (There's another version of the program that's focused on ASDs, called More Than Words, but we didn't have a diagnosis at the time.)

The Hanen training gave us a magnificent foundation for getting more out of Joy's communication, turning us into better Joy-listeners and communication partners.

The Hanen program was founded in Canada for the very situation that we were facing: frustration with long waits for professional speech therapists, families who needed to get started "right now." It's an incredibly empowering approach. As their site says,

The goal of It Takes Two to Talk is to enable parents to become their child’s primary language facilitator, thereby maximizing the child’s opportunities for communication development in everyday situations.

Some of the highlights of the Hanen program, for me:

• An emphasis on meeting your child where she's at. This includes a very basic physical principle of positioning yourself to be really face-to-face with your child, rather than talking at her from on high. But it also entails letting you child show you what she's interested in, and paying close attention to her cues, and responding in a way that stands a good chance of drawing a further response. It Takes Two to Talk calls this the "Tuned-In Parent."


• An emphasis on playfulness and fun. As in, your kid's going to be much more interested in sticking with a social interaction if it's enjoyable all around. Let go of thinking that you have to make them talk (how many times have you heard an adult doing something like: "Hey, Joy, can you say 'spoon'? C'mon, say 'spoon' honey. Say 'spoon'!" and then she doesn't say 'spoon' and it gets totally un-fun for everyone.) Instead, enjoy what interactions they *can* do... maybe pretend to eat from the spoon. "Mm, good food!" then pass the spoon back and say "Joy's spoon!" and maybe she can pretend to eat too....


• One acronym I actually remember from the program, which is OWL, for Observe, Wait, Listen. Observe to see what your child is interested in. Wait to give her enough time to send you a message, whether a sound or gaze or action or whatever (it helps to lean forward and look expectantly, sending your own message that you are indeed waiting for a communication!) Then Listen for your child's message, paying attention to as many cues as you can. Even if you can't understand what her response, if you've waited and watched, you can often take a good guess and respond accordingly. Or else take a turn by imitating... and then OWL again to give your child the next turn in the interaction.

I found that a lot of this came pretty easily to me, once I took the time to think and practice. Of course there were many more steps, and thought-exercises, and we also got several video-taping sessions with the speech therapist who was leading the training so she could comment and critique how we were putting the principles into practice. It was simply thrilling to see Joy respond.

Well, another reason we ended up doing Joy's intensive autism therapy with Agency 2 and their House Blend was that their approach builds on similar principles. In fact, the James MacDonald (PhD) that I've mentioned before was involved in developing the Hanen program early on, and much of that work is evident in the Communicating Partners program that he later developed. His latest book, Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation, co-authored by Pam Stoika (PhD), is a highly-readable explanation of the approach and strategies. (Plus it's reasonably priced, what a bonus!)

The parent-empowerment agenda is powerfully stated on the very first page.

If you are concerned about your child's social development, communication skills, behavior or learning, the first and most important thing to do is to find a person (or small team of people) to be your child's social language teacher. In our experience, your child will make the greatest gains with a social language teacher who is:

• Someone who is already a competent communicator, with words as well as gestures and non-verbal communication.


• Someone who will be available to teach your child in a variety of real-life settings, such as play time, chores, meals, family outings and daily routines


• Someone who your child likes and trusts, and who likes and trusts your child


• Someone who is familiar with and dedicated to supporting the cultural and family values you hold dear


• [the list goes on!]...

Mothers and fathers, grandparents and guardians: go to the nearest mirror and look.

You just found your child's best social-communication teacher.

So, the Play to Talk / Communicating Partners training was what we layered onto the Hanen training when we were in limbo on the waiting list for intensive autism therapy, and we both wanted to keep moving forward and also start building our relationship with Agency 2.

Here's the gist of the Communicating Partners program: strategies that seem simple, but each of them can be unpacked pretty far and take quite a bit of effort and practice to really internalize!

• Balance: Do and say about as much as the child does and says. Allow child time to participate.


• Match: Talk and act in ways that are possible for your child. Talk and act in ways your partner can and will want to try.


• Respond: Let your child see that you are paying attention to his feelings, actions and words.


• Share Control: Be sure each partner has impact on the other, each partner has some control but not total control.


• Play and Affirm: Let your child see that you enjoy and value him just as he is.

All this represents another layer of our days with Joy, and the principles according to which our House Blend baristas are trained as well.

Upcoming layers: Joy's therapy goals, and how her school-district therapists fit into all this too. And maybe some bunnies.

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?

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...