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?

Updates and Downdates

Doesn't it always seem to be a bit of cognitive dissonance when an "economic UPdate" comes on the TV or whatever, and then the news is all about how things are spiraling DOWN?

Anyway. We've got both ups and downs here, so we got both updates and downdates.

UPDATE: Rose is feeling much better. She went to school on Monday, only a little worse for the wear (achy muscles from all the hurling). Cute Rose story from yesterday: we were in the car on the way home from piano lesson and she asked me, "Did men always used to have to have short haircuts?" I started an answer about how it wasn't that you had to have short hair, it was just...

"Tradition!" she supplied from the back seat. I chuckled and told her what a grown-up girl she was, that that was exactly the right word.

"Yep," she replied smugly. "I'm a human dictionary!"

That's my girl! A chip off the ol' OED!

UPDATE: Joy's "more" sign has persisted this week. She's not using it at every opportunity, but we're still seeing it occasionally. She also seems to have retrieved her old sign for "all-done," which consists of self-applause. Which makes sense, because what do people do when you finish an achievement? They applaud and praise you! She used it remarkably well at Tuesday lunch, when I was around the corner as she finished the food she wanted to eat. I heard the clapping and came running, and she was absolutely telling me she wanted to be done. And then I told her that she needed to eat a few more bites of ham before I'd let her get away with being "all-done." Heh. Little stinker.

DOWNDATE: Sigh. This one harkens back to my Rules post the other week, in which I ranted about the ridiculous conditions and hoops to jump through to get 3 months worth of House Blend therapy (at 4 hours per week) at our fabulous daycare. Our daycare lady, Lynda the Wonder Woman, provides just an ideal setting for therapist work, and is a full member of our team. The daycare setting provides Joy with the opportunity to work on generalizing goals that she's been working on at home, into her "home-away-from-home" setting where she gets to interact with more peers.

Well. The response came back last week.

They said that in the next 90 days, we could have FOUR of our 4-hour therapy weeks. We're to sprinkle them throughout the 3 months as we see fit, but the emphasis should be on training Lynda so that we can fade out the need to have the therapy at the daycare at all.

This is not a decision made with Joy in mind, or with any clinical basis in the situation. This is a bean-counter decision, made in service of an apparent crackdown on therapy hours outside of the home in general.

ALL kids need structure, and stability, and routine. Kids on the spectrum have an even greater need for structure, and stability, and routine.

So, let's jazz things up at daycare, shall we, with 4 hours of therapy in week 2 of twelve, and then we'll take two weeks off, and then we'll have another week with 4 hours of therapy, and then we'll take three weeks off...

You see what I mean. That kind of approach isn't particularly kind to barista-schedules either, might I add.

It looks like our only sensible option is to take all four weeks consecutively, starting next week. And then we're out. No more therapy at daycare. No further venue of appeal, other than the committee that handed down the decision to begin with.

Well, our particular case might not be appeal-able, according to the rules that are apparently being re-written and tightened as the months go by. But when the rules are THAT BAD, maybe someone needs to do something to get those rules changed in the right direction....

Will keep you posted. If I need help, I'll let you know that too. Not quite sure what form this will take yet.

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.

Knows What She Wants, Knows How to Get It

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

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

The barista eventually hid the pony away.

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



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

Icky Bicky Soda Cracker

We actually got the snow cleared off the deck over the weekend as the weather warmed up, and un-earthed (de-iced?) Rose's jumprope. Such fun to do springtime activities again! I was dredging my memories for counting rhymes for her, and came up with this one:

My mother, your mother, live across the way
Every night they have a fight and this is what they say:
Icky bicky soda cracker
Icky bicky boo
Icky bicky soda cracker
Out goes you!

Maybe "icky bicky" is what Joy has been trying to say lately...

In the past couple of weeks, Joy has been fine-tuning a two-syllable utterance. It sounds something like this:

• ICK-ee


• EYE-go


• ACK-er


• UGH-go

Now, one of the precepts of the Hanen & Communicating Partners training that I wrote about earlier is that you honor your child's vocalizations. Even if you don't know for sure what the intent is (or if there's any intent at all), if you encourage the vocalizations and treat them as legitimate communicative turn-taking, you encourage the patterns of social interaction and the idea that "when I say THIS sound, they think I mean THIS!"

So if there's anything at all that fits the sound, that'll be how we interpret it. Or if there's nothing in context that fits, we'll just imitate or play with noises. Anything to take a communicative turn.

You would be amazed at how many things the ICK-ee/EYE-go/ACK-er noise can mean.

Buckle! This one actually feels legit, in context of Joy buckling herself into her booster chair at food time.

Cracker! Speaking of food... again, we've had some really neat exchanges where it absolutely does sound like cracker.

Tickle! I heard her going back and forth with "tickle" with one of her baristas yesterday. Sure sounded real.

Thank-you! Does she know what this means? It's definitely felt like she's imitating it...

Got it! She used to have this phrase in a solid, stand-alone way, back when she had 80-some words.

Hot dog!
Echo!
Doggy!
Icky!
I go!
Blanket!
All-gone!
Icky? Bicky? Soda Cracker?

An incredibly useful utterance, wouldn't you agree?

Meanwhile, there are a few other vocalizations in the mix. Yesterday the "tickle" barista also got Joy to imitate "b-b-b" and "p-p-p" sounds. We're also getting "go" for go and "guh" for hug from time to time. Yesterday she started saying "no-no-no" just moments before attempting to climb onto the table on the deck, something she knows is a "no-no"!

We'll keep tracking this talking stuff. It's in there somewhere.

Meanwhile, when I told Rose the "icky bicky" counting rhyme, she giggled and then asked what the mothers were fighting about. I told her I had no idea, but later it occurred to me...
Maybe they're on opposing sides in the various autism controversies...

My mother, your mother, live across the way
Every night they have a fight and this is what they say:
Icky bicky DAN! doctor
Neurodiversity too
Icky bicky Andrew Wakefield
Out goes you!

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.

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...