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.

Elvis Says "No!"

Interesting language use this week with Joy.

We are still not really hearing words on a consistent basis, though there's been a fair amount of vocalizing. Our "Popeye Sighting" (when she used the word "ug-ug-ug" for "hug" a while back) has remained in the Elvis Sighting category -- I've only heard it once since. There are a few other words that come and go:

-- "gog-gog-gog" for doggie
-- "chuh" for chair (her mealtime booster-seat)
-- a few sounds from the farm See-n-Say, her current favorite toy
-- one blessed Elvis-Sighting string of "ma-ma-ma"

The most interesting recent Elvis Sighting to me, though, is her use of the word "no." She's been doing some deliberate "nuh-nuh-nuh" to mean no, but there have also been just a couple very clear, distinct, definitive "NO" utterances.

Here's the interesting bit -- unless I'm mistaken, they've all been said to just one of her 5 intensive-autism therapists (who reads this blog faithfully, so, hi!) Not to me, or her sister, or Lynda at daycare, or JoyDad, or her school district therapists. The context tends to be when this particular therapist asks Joy to give her something that she doesn't want to give. Joy has, on just a few occasions, pulled the item away and said no, clear as a bell.

Fascinating!

She's also been responding better to "no" or "stop" from adults in a certain stimming situation she's been very persistent about. Which would be... umm, how to say this... oh well... humping. Pillows, stuffed animals, her blankets. She can get very... intense about it. Such a little sensory-seeker, our girl! It's not exactly that it's a problem, but it's the primary activity that keeps her awake when she oughtta be sleeping, and also pulls her into her own little world when she could be doing more useful, or interactive, or socially-acceptable things. So when she's not alone in her crib, we've been working on getting her to replace it with other activities.

It reminds us a little bit of another sensory activity that she was once very persistent with, which involved playing balance-beam with our low picture-window frame in the living room. There's just enough of a ledge, about a foot off the ground, for her to teeter on... and she went through a long phase of absolutely loving to teeter. Unfortunately she often teetered too far, and picked up lots of sad little bumps and bruises!

JoyDad's been the leader in these situations. I'm too much a softie, tending to think along the lines of "well, if that's the input she needs, I hate to get in the way." But JoyDad doesn't give up so easily. And, with repeated gentle admonitions (together with physical redirecting if need be), he eventually gets Joy to respond to a "No" or "Stop" voice-prompt. It eventually worked on the ledge-teetering issue -- I'm sure that he's the main reason the dimmer switch eventually slid to "off" and she stopped doing it altogether. With the "Joy loves her stuffed animals" situation, she is now willing to stop on voice-prompt. First she only accepted it from him, now she'll respond to the "no" from me (and I think from Lynda too) in that situation as well.

Yay, JoyDad!

A Single Goal

I should probably call this post "A Single Goal: or, More Cosmic Convergence."

Way back in August, Barbara wrote a post at TherExtras that criticized the hodgepodge that often results when too many experts are trying to accomplish too many things with a child:

What I don’t commonly see - or have not seen most of 30 years – are concentrated efforts to learn one skill at a time. I don’t hear or read families that do this. I’ve never seen an IEP that said “this school year Aloysius will be potty trained” or “Esperanza will learn to feed herself” – not at the preschool level, not at the kindergarten level, not at the elementary level.

How many high school students in special education do you estimate I’ve met who cannot do either toileting or feed themselves without assistance?

As I told Barbara at the time, Joy has a standard multi-faceted IEP, chock full of various goal areas for her therapists to address with her.

But even before the school year started, I had a conversation with Joy's school-district team leader. Unprompted, she told me that she had a thought for a single overarching goal for Joy this year, IEP complexity notwithstanding. That concept was: imitation.

Though it was a different angle than the single movement-oriented and task-oriented kind of goal that Barbara presented, there was power in that single simple-yet-not-so-simple idea of imitation. It has been a useful touchstone throughout the semester so far.

So then yesterday morning I once again had the chance to hang out with the incomparable Mama Mara. We got to talking about our respective blogs and I was musing on some of the posts I'd been meaning to do, and mentioned the single-goal thing. Her eyes lit up with cosmic-convergence connectedness, and she told me about her son's case manager at last week's parent teacher conference asking her the single-goal question: if you picked just one goal for your son this year, what would it be? I am terminally impressed that Mama Mara had an answer at the ready: that he would be able to get a handle on the "stuff" he needed to get through the day, keeping track of coat and backpack and such.

And thus do good ideas meet, shake hands, and ripple back out into the blogosphere...

Just-in-Time Blessings

There has been a string of events over the past couple of weeks, in which just what I needed came along at just the right time.

First was Rose's bicycle. She's been riding on a low-budget little garage sale bike, with training wheels. I think she was physically ready to ditch the training wheels quite a while ago, but she couldn't find the confidence just yet. However, she's grown so much that the little bike with training wheels is getting almost un-ride-able.

So the other week she was out riding the too-small bike up and down our street, and I'm thinking, "We really need to get her a new bike. Maybe in the spring." And then one of Rose's playdate neighbors (3 years older) and her dad come biking down the street. Playdate neighbor is proudly riding a big bike, just that day handed down from her older sister. Dad says, "Yeah, her little bike was really getting much too small." And I say, "Do you have plans for the little bike? Could I perhaps buy it for Rose?"

He accepted a pittance, but the new bike is much sturdier and upscale than anything we'd have sought out. Plus, it doesn't have training wheels, nor do the ones from the little bike fit it. Rose is delighted with her new toy, and will have great incentive to learn to ride it in the spring.

Fast-forward about a week... I'm backing the car rather carelessly out of the garage, with two girls distracting me in the back seat, and don't notice that I've mis-parked Joy's stroller so that it's sticking just a little bit out from its place.

Crunch. The poor stroller was held together with picture wire anyway, and I'd been mulling the thought of a replacement, but wasn't quite planning to stampede myself into it quite like this.

The next day I'm walking Rose to school, with Joy sitting solo in our old heavy double stroller, which was the only option left in the garage. And on that very walk, the same playdate neighbor girl catches up with us and says she & her dad were going through their storage shed, and since we took the little bike off their hands, would we maybe want to take a jogging stroller off their hands as well? I kid you not! Again, an item in good condition which, when new, was way pricier than we'd have considered shelling out for. So not only does Rose have snazzy new wheels, so does Joy.

The next couple of just-in-time moments were more idea-based than object based.

So Jess over at diary of a mom posts this cool entry about how she's been challenged to train for a half-marathon, and further challenges all her readers to join her. I can't imagine it. I'm too over-committed, and to work up to running that far just involves chunks of time that are beyond what I can do. I'll be cheering for her though... and a seed had been planted.

And then I read an article in Time magazine about the results of a long-term study at Stanford that started following 538 middle-aged runners vs. a control group of non-runners back in the 1980s. There were half as many deaths among the runners as the non-runners, and the onset of disability was 12 to 16 years later for the runners. No difference between rates of osteoarthritis and knee replacements. And, the article advised, "the best way to start an exercise regimen is to come up with a goal, such as losing 10 lb., running a half marathon..." Whoa.

And THEN my wild-woman fire-eating sister-in-law, Auntie Run-at-the-Mouth, posts a just-in-time link over at her running blog. It's a program called the Couch to 5K plan, where you do three walking/running workouts per week, under 30 minutes each, increasing intensity gradually until you're running 5K. Now, I hadn't run in something like 6 years, though I'm in reasonably fair shape thanks to my bike commute. But the bike commute will be ending soon for the season (will post more on that later), and we've got a perfectly good treadmill, on which I ran the first of the training sessions Tuesday. It felt just right.

PLUS -- when the weather is nice enough -- I've got a jogging stroller!!!

I'm going to set a 5K goal for now. But who knows?

On top of all that -- I've got yet another just-in-time blessing to report.

This one relates to my previous post about wanting my home to be a favorite place for Joy's therapists to work, and how a certain standard of housekeeping might relate to that.

Well, the very next Sunday our adult Sunday school class spoke to me on that issue.

Our church has been involved for a number of years in the work of Interfaith Hospitality Network, a program in which congregations take turns opening their church building to host homeless families for a stretch of nights, in a climate of overflowing "traditional" homeless shelters. Our church took an extra step over the past two years, helping mentor one specific family and raise money to rent an apartment for them, with the intent of providing a more permanent path out of homelessness. Things are now more stable for the family, and they've gotten Section 8 housing and the dad has a full-time job, and our church's intensive involvement with them has wound down. The mentors from our church did a presentation looking back on their experiences.

There were three mentors, one for each family member (mom, dad, son). Of the many things the son's mentor had to say, two things were paramount.

First, I learned that the son was on the autism spectrum. Whoof.

Second, the mentor spoke about the challenges of how homelessness can perpetuate itself. Kids who spend a significant portion of their growing up homeless, may tend to internalize it as just the way things are. There are also things related to having a home which, if you don't see your parents handling them, you won't learn them yourself.

Like housecleaning.

One of the goals that the mentors for all three family members worked with was teaching how to keep a home in decent shape. Basics such as how to hold and use a broom...

I think, in my favorite place post, I may have been somewhat too glib about the challenges that so many families face, focusing instead on the challenge the therapists encounter. Perhaps instead of the hint of competition that crept into my musings, I might think instead of providing a place where therapists can draw strength to carry onward to the homes where various challenges keep working conditions from being ideal. Those kids need the therapists at full strength, at least as much as Joy does...

Important food for thought, at just the right time for me.

I am reminded of how God gave the Israelites manna in the wilderness (Exodus 16), enough for each day, for forty long years.

Just what was needed, just in time.

Favorite Place

I'd like our home to be our therapists' favorite place to come work.

Actually, I'd like all their clients' homes to be the favorite, such that every therapist could look forward to every visit with every family! But I know that's not how it is in the real world, and since the only home I can influence is my own...

This "favorite place" idea of mine grew organically from the seed of wanting to get the most out of our therapy visits as possible. To me, that meant being present and engaged to try to learn all I can from the therapists' expertise; sharing what I know about Joy and what's going on with her; and coming up with my own ideas about how we can work together.

It also meant being organized, and available, and on-time for the sessions. (Occasionally I flub, but get easily forgiven because of my track record.)

Therapists respond positively to such efforts! Cordial partnerships have ended up becoming friendships, and I've ended up with even more reasons to want to make things pleasant.

I found myself taking a little extra care to keep the floors on which they work/play from getting too disgustingly grungy, and to keep the bathroom reasonably clean as well. Not that I wouldn't do that for our family (right?), but this provides an extra little kick in the pants.

Then there are the little things that make life a little sunnier. Like small gifts of produce from the garden. (Especially among our intensive-autism line therapists, these people aren't making a princely wage!) Or passing along a certain jack-o-lantern stencil to a therapist who gave me the thumbs-up about a certain sign in our yard. Or complimenting a therapist on the piano piece she played for Joy during a session, ending up with me asking to borrow the sheet music.

Most of this stuff I'm almost doing more for me and Joy than for the therapists, and I wouldn't be doing these things if I felt it was a burden or an obligation. Instead, it makes me happy -- and it makes them happy -- and happy therapists are more likely to bring that attitude through the door.

As I said before, ideally there would be no hint of competition between families. And I know that there are reasons why, say, one's bathroom might be hard to keep clean or life is just too freakin' insane to do one more extra thing. I've had stretches like that, most notably this past winter, and nobody's held it against me.

Speaking of this past winter, for Christmas last year we gave our therapists little gifts of homemade strawberry freezer jam. For some reason, thinking back on that now, it reminds me of a line from a LaVyrle Spencer romance called Morning Glory. (Yes, I do have that kind of stuff on my shelf, among the highbrow goodies. Now you know.) Anyway, the heroine is trying to hire a lawyer, during WWII when money is tight, and she brings with her a quart of honey from the farm.

"Might this be construed as bribery, do you think, Gladys?"
"Construe it any way you like, but try it on a bran muffin. It's indescribable."

Construe this any way you like!

Maybe.

Joy & Rose's great-uncle & great-aunt gave them a lovely picture-book a while ago, a Caldecott-honor book by Jon J. Muth called Zen Shorts. The book tells several stories-within-a-story, short Zen meditations told in a manner appropriate for children.

Here's one of them:

There was once an old farmer who had worked his crops for many years.
One day, his horse ran away. Upon hearing the news, his neighbors came to visit.
"Such bad luck," they said sympathetically.
"Maybe," the farmer replied.

The next morning the horse returned, bringing with it two other wild horses.
"Such good luck!" the neighbors exclaimed.
"Maybe," replied the farmer.

The following day, his son tried to ride one of the untamed horses, was thrown off, and broke his leg. Again, the neighbors came to offer sympathy.
"Such bad luck," they said.
"Maybe," answered the farmer.

The day after that, military officials came to the village to draft young men into the army to fight in a war. Seeing that the son's leg was broken, they passed him by.
"Such good luck!" cried the neighbors.
"Maybe," said the farmer.

This story is good food for thought for me. I'm not a lot like this old farmer (garden produce notwithstanding). I tend to get dragged down by the "such bad luck" times and get mighty euphoric with the "such good luck" ones.

Here's one recent sequence of events and how it might look in some alternate-universe version of a JoyMama who's got the Zen thing going on:

Toward the end of last school year, JoyMama learned that Joy's speech therapist was going to take a different position in the school district, and wouldn't be available for Joy's team the next year, though ideally we'd have loved to see all three team members continue.
"Such bad luck," her loyal blog-land friends commiserated.
"Maybe," replied JoyMama.

Then we learned that the replacement would be a newer speech therapist with a lot of energy and good ideas. The new speech therapist coordinated efforts with the occupational therapist to bring projects to Joy's daycare in which all the daycare kids could participate. Not only is Joy taking well to the new strategy, but now is producing take-homes suitable for scrapbooking!
"Such good luck!" came the cheers in the comments.
"Maybe," replied JoyMama.

Then came word several weeks into the school year that the occupational therapist, who's been doing wonderful work with Joy and MADE several weighted vests for her, got reassigned to classroom-based work and would be leaving the team pronto. Now a totally unfamiliar OT would have to learn all about our complicated little sensory-seeker, all from scratch.
"Such bad luck," sympathized the readers.
"Maybe," replied JoyMama.

Then we learned that the new OT we've been assigned comes to the school district from Birth-to-Three (so she's experienced in working with early-childhood issues) and not only that -- she used to be the OT for one of the other kids at Joy's daycare, so she's already acquainted with Joy and Lynda and how the daycare is set up! I met with her this morning, got her signed up onto our team Yahoo group, she asked good questions and sounds enthusiastic.
"Such good luck!" exclaimed the bloggers.
"Maybe," replied JoyMama.

I guess we'll have to see what's next to come our way!