Showing posts with label baristas. Show all posts
Showing posts with label baristas. Show all posts

Tuesday, March 22, 2011

Break!

There's some wonderful stuff going on with Joy, beyond the birthday party and swimming I talked about in the last post.

I haven't yet told you about the birthday card she decorated for her classmate. Poor Joy has not had a happy relationship with writing-utensils over the years. We keep trying to get her to make marks on paper, and she would rather do anything else -- crumpling the paper ranks much higher on her preference list than drawing on it. Even so, I've made her "sign" every card that's gone out under her name or from the family, usually a hand-over-hand mark made under protest.

But they've been working at school with drawing-on-paper. And look what she produced when I put marker in hand and held down the birthday card for her to "sign":

photo of birthday card decorated by Joy

All I did was hold the paper down. She did the spirals herself, no hand-over-hand involved except to help get the marker-cap back on.

But wait, there's more.

In our computer-bookmarks for years has been a fun baby-game site called Kneebouncers. The games are super-easy and work by just clicking on the screen or hitting any key. Unfortunately they recently went to a paid-subscription model, but there are still a couple of freebies, and we made a great breakthrough with one of those this weekend. The game is called Peek-a-bouncer, and to make it work, you have to click-and-hold (or push any key and hold). Then the curtains slide open and you see a funny face and a voice intones "peek-a-boo!"

Joy always tended to get frustrated with this game, because with the other games, all she had to do was a quick click to make things happen. In Peek-a-bouncer, if you just quick-click, the curtains barely budge and the voice gets cut off.

But on Sunday, after much hand-over-hand play, where I'd help her hold the mouse-button and I'd say the words "push-and-hold!" in the same tone as the "peek-a-boo!" -- she actually began to push-and-hold on her own. Experimenting with how much hold it took to create how much effect.

Oh, my goodness.

And then!

Last night Joy's newest barista (autism line-therapist) got Joy to turn a difficult evening around quite dramatically. Joy had been having a rough time, didn't want to be in any of our standard rooms, the barista was trying all the favorite stuff to no avail. They were working in Joy's bedroom when the barista as a last-ditch effort thought to ask her: "Break?" And Joy understood immediately, and dived on her own into her bed-tent, where she immediately set to work on putting herself back together. Over the course of 5 minutes in the tent, Joy stimmed herself from angrily-overwrought into pleasant-mood. The rest of the session then took place in pleasant-mood mode.

This is something we're going to USE. Again: Oh, my goodness.

[Bet you thought from the title of this post that JoyMama was going to be taking a bloggy break. Heh. Not a chance. You're stuck with me.]

Friday, September 10, 2010

Expect the Unexpected

I'd read a lot of blogging about the phenomenon. About how kids on the spectrum (and some kids not!) put so much effort into keeping their heads above water at school, keeping it all together during the day. Then they get home where they're comfortable and can let their hair down -- and all hell breaks loose.

I read about it again just this week, as my dear bloggy friend Jess described an absolute mess of an inconsolable evening. Her daughter's aide at school later said, "When I saw how hard she was working to manage herself and to redirect her energy when the stress was too much, I knew full well that we were purchasing our morning with your evening."

We'd gotten the warning from our Agency 2 autism-therapy team leader as well, who cautioned us to be very careful about how much therapy we might be planning to load into the evenings of a kiddo who was going to be working very hard all day at school. We ended up deciding to use the start of the school year as a transition point from intensive-level therapy (24 hours per week in Joy's case) to a "post-intensive" level of 8 hours per week.

So how have things been going at home, this first week of full school days, now that Joy's recovered from that fever she had?

First off, I get the most amazing hugs when I pick her up from school in the afternoon. She crawls up into my arms and hangs on me while I hear about the day from her aide. It feels like somewhat like a big sigh of relief, even though she (of course) doesn't verbalize it. Mama. You're here.

Tuesday, the first afternoon home this week, we chanced things with an impromptu playdate at our house, a family that has an older sib for Rose and a younger sib for Joy. Joy and her friend spent the time happily in the playroom, crashing on the pillows & couch, crawling through the play-tunnel. Joy was more interested in bouncing on her exercise ball and looking at herself in the full-length mirror, while her friend was more interested in filling plates with play-food to serve the mamas, but when they interacted, there were smiles and giggles.

Wednesday we had the first encounter with an evening therapy session after a full day of school. Joy was so happy to see her barista. At the end of the session, the barista commented that Joy really seemed to be taking delight in familiar games with a familiar person. There's that sense of relief again...

Thursday, we went to the park after school with the same friends as on Tuesday, plus one extra. Joy was once again in a good mood, and spent a fair amount of time on the little merry-go-round with all four of the other kids, despite much noisiness from the older ones.

Maybe it's a honeymoon, maybe it's a fluke, maybe it will all fall apart this evening or next week. But so far, this week's expectation-shattering has been every so much nicer than last week's expectation-shattering.

I oughtta have figured out by now to expect the unexpected!

P.S. The latest funniest-things-in-the-world: the act of yawning, and the word "panda."

Saturday, August 21, 2010

Hope for the Next Generation

TIME: Is America Islamophobic?
Time magazine asks on its cover this week:
"Is America Islamophobic?"


Rose: What's that word? Is... is...

JoyMama: Islamophobic.

Rose: What does that mean?

JoyMama: It means being afraid of Muslims.

Rose: Why? They're just people!


In appreciation of one of Joy's recent baristas, and of Rose's first daycare lady. We've so appreciated their presence in our lives, and wish them grace and courage in the face of others' fears.

Tuesday, November 17, 2009

Elvis Wants a Cookie

Anyone for some positive stories?

  • We've heard so few words from Joy, for so long -- other than the "more" sign, some photo-choice-making on her Go-Talk, and the occasional "uh-oh". But tonight at dessert time, she echoed the word "cookie," clear as clear. Just once. JoyDad and I both did a double-take. And gave her one with chocolate chips.

  • Speaking of the "more" sign. The other day at breakfast, JoyDad came swooping past to distribute kisses to his breakfasting ladies. Joy giggled at him, and tilted her face up. And then after receiving her kiss, she signed a great big "more"!

  • And still more "more" -- today I was home with Joy, and had a few minutes where she was playing in the living room and I sneaked in some plunking on the piano. I've given up trying to play piano when Rose is around. I don't know why, but I get great big huge objections to my playing if Rose is within earshot. So it felt really good today to end a section of the Maple Leaf Rag with a big flourish... only to look up and find Joy grinning at me and signing "more"!

  • Some totally cool imitation/initiation -- this morning one of Joy's baristas reported that Joy had snagged a tissue from the box and used it to go after the barista's nose! She did it again to me later on in the day. Unfortunately in my case it was with a nasty tissue that was blowing around the playground that she picked up. But the thought was in the right place.

  • We had a therapy-team meeting last night, where positive stories are always the first agenda item. Joy bopped around the living room during the meeting, with her Baby Einstein video on repeat-play. She has never shown much interest in the meetings. But last night as the meeting was nearing a close, she decided that she wanted in on the action. She sidled up to Lynda (her Wonder Woman daycare lady) and climbed right up on her lap. And then she did this marvellous flirty little sequence of turning to make eye contact with Lynda, with a great big ol' grin. Over and over.

Accentuate the positive!

Friday, October 2, 2009

To Cancel a Thursday

Fortunately, we didn't have to cancel a thing yesterday - happy first day of October, and all.

Last week was a different story.

Mid-way through her evening therapy session last Wednesday, poor Joy suddenly began to empty the contents of her stomach onto the dining room floor. I could not believe that one little body could hold so much! We ended the session, bathed the girl, started the laundry, and then had two more rounds of heaving as the evening went on. She slept through the night, but there was no way that we were going to be able to go with the Thursday as planned. JoyDad & I were both scheduled to work, but decided to split the day at home to take care of Joy.

So who did we need to contact?

1) Lynda, Joy's regular daycare lady, to let her know of the incident and ask if Joy was the only one. (She wasn't - the bug had been going 'round the daycare, but at least we learned that the barfing was short-lived and the recovery was only about a day.)

2) The babysitter for the day, the new one we've hired to come into our home on Thursdays to supervise the Thursday therapies, thus shaking loose the hours I need to do my LEND leadership training program this semester.

3) Four regular baristas (therapists), plus a supervisor and a trainee.

4) The neighbor who walks Rose home from school, to let her know to call our home number and not try the babysitter's cell if they decided to play at the park on the way home.

5) My workplace.

6) JoyDad's workplace.

7) The evening babysitter - who actually got to us first because she wasn't feeling well herself! I had been planning to get out for a rare chance to see a show in which JoyDad's band was opening for another act. (Dagnabbit).

8) The wife of the singer in the band, whom I was going to pick up on the way to the gig.

OK, by my count, that's 13 notifications.

We're blessed to have that many people involved in our lives, and Joy's, and Rose's.

But... mercy.

Fortunately Joy recovered swiftly, as expected. None of the rest of us have shown any signs, and now that a week has passed, we're expecting that we're good to go. Which is helpful, because we're off to the northwoods for the weekend, starting early Saturday morning.

See you afterwards!

Tuesday, August 11, 2009

Positive Stories

Last night we had a team meeting at our house, one of those delightful gatherings that gets all (or almost all) of Joy's baristas (intensive autism line therapists) in one place at one time, together with me & JoyDad & Lynda the Wonder Woman daycare lady.

These are remarkably productive meetings when we keep them on track. The biggest thing that threatens to derail them occasionally is that everybody gets too involved in the very first agenda item...

The first agenda item is positive stories.

I love starting meetings this way, and I love the fact that people have SO many positive Joy-stories to tell, that it threatens to take up too much of the meeting sometimes!

Last night's positive stories included:
  • Joy ate an entire helping of cut-up spaghetti & red sauce -- with her fork. With almost no guidance.

  • When one of her baristas was playing pillow-squish game with her, and saying a big ol' "Squish!" each time the pillow came down, Joy several times echoed the unusual sound "KW".

  • At daycare, Joy was in her chair at the table playing with a puzzle, something that's usually not a big turn-on for her. Another child decided to be "helpful" and came over to take over, pulling pieces out of Joy's hand and putting them in the puzzle. And Joy, instead of checking out on the interaction, got mad, tried to hold on to the pieces, even succeeded in getting some back!

  • Joy imitated monkey-noises, "oo-ahh-ahh-ahh".

  • The "high-five" that we've worked into Joy's greeting and bye-bye routines has caught on like wildfire. It's such a charming way that she can interact that feels "normal" to people, and they respond with such delight. She high-fived the sheriff's deputy who came to change her Project Lifesaver battery, and a whole bunch of folks at church. Plus she high-fives Rose, who is a model of patience in holding her hand at the ready and waiting for Joy to come through with that high-five.

Once we've got a good foundation of positive stories to build on, it's ever so much easier to bring out the challenges, like how do we deal with Joy's grass-pulling and rotten-apple-eating in the yard? (we're going to try to provide stretchy-sequin bands, which have helped at daycare) or how do we deal when she's pingpong-ing around and won't slow down long enough to interact (sometimes it's calming to get her sitting in the high-chair, notched down to its lowest setting near the floor.)

Positive stories. Didn't I just mention recently how much I like them?

P.S. Here are some positive stories from me. This morning I went running again (OK, alternating walk with slow-jog) for the first time since I broke my toe last month. It felt fine. And, I interviewed yesterday for the university program I was talking about the other day, that would take my plate-spinning to a whole 'nother level. I don't think I've ever been so relaxed and confident in an interview before. The program feels RIGHT for me. Now the committee just has to agree! I should find out Thursday which way the decision tips.

Thursday, July 30, 2009

A Wedding Reception Story

One of Joy's baristas had a fun story to tell today. She'd recently been on vacation for a family wedding, with her large extended family.

It sounds like the reception dance was a joyful affair. One of the highlights of the evening, after the guests had gotten a little loosened up and let their hair down, was the song Baby Got Back, a raunchy ditty with a strong dance beat. The lyrics reflect masculine appreciation of a generously-proportioned female backside. (Yes indeedy, objectification of women. Tsk, tsk. Though occasionally it's fun to boogie down to a song that objectifies MY particular variety of shape... but I digress.)

Anyway, everyone was out shaking it on the dance floor. The star of the show was a young man of about the age of ten, who was mingling and cutting up and showing off and having a blast of a time. His enthusiasm contributed greatly to the general merriment!

In a later conversation with the bride, the barista found out that the dance-floor star was a cousin from the other side of the bride's family. The bride was simply delighted to see her autistic cousin out there having such great fun with the relatives...

I like happy family-reunion stories.

=================

My next post will be Post Number 200. I believe I'll reflect back and select a top ten list of my posts so far. If you have a favorite to nominate, let me know!

Sunday, March 29, 2009

Teaching Hospital/ity

We live in a university town with a slew of medical education programs.

Our university-connected health care is attached to a "teaching hospital" and generally comes with observers and learners accompanying the doctors, particularly for pediatric stuff. Joy's neurologist generally comes through the exam-room door like a mama duck with three or four little ped-neurologists-in-training swimming in his wake!

Joy doesn't seem to have a problem with this. She likes people, on the whole, and doesn't fuss at new faces. And I'm happy to accommodate. The world needs more pediatric neurologists, etc., and how else will they learn? I suppose that in certain circumstances I'd refuse to let my kids or myself be "practiced" on, but that really hasn't come up yet. With Rose's broken arm last year, the cast was wrapped by a student, under the careful oversight of the experienced emergency-room doc. At one point I let a student start an IV on Joy. What better subject than a kiddo who demonstrates so little fear and has a high pain tolerance? (Though if she'd missed the stick, I'd have asked for the teacher to finish the job. She did fine.)

We've opened our house to students too. Again with a university in town, the local Birth-to-Three was a natural fit for having therapists-in-training who were looking to Joy's therapists as mentor. Some of them brought some really interesting ideas and approaches, and Joy never rejected a single student.

Recently Lynda the Wonder-Woman daycare lady hooked us up with a friend of hers who also runs a home daycare and who was taking a class on inclusion of special-needs kids. She needed a lot of hours of observing such a child, at daycare and home and in therapy, to meet class requirements. We took her grocery-shopping with our family, opened our home to her, let her observe Joy at Lynda's. The world surely needs more daycare providers who have what it takes to care for and teach children like Joy!

One of our intensive autism line therapists, our House Blend baristas, has a special training role in the Agency 2 organization. We opened Joy's sessions to one of her trainees earlier this year too, training for someone else's team. The trainee connected nicely with Joy, came for quite a few sessions, expressed regret that she wasn't going to be working with Joy.

And then at the beginning of March, we suddenly wound up with a big gap in our schedule where one of the baristas had been. We thought of the new trainee... and she leaped at the chance to join us! She's been doing a great job so far. We could have limped along for weeks while Agency 2 tried to hire someone new for us and then got that person trained up from scratch. As it was, we were up and humming with a full team again remarkably quickly.

Hospitality and teaching are good things.

Monday, March 23, 2009

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?

Thursday, March 19, 2009

Elvis Rides A Trike

It's been a very spring-ish week. The yard is still soggy and even snowy in places, so we haven't let Joy out to muck around by there yet. Fortunately, though, we have a nice deck that catches the afternoon sun. Joy was out on the deck with her barista this afternoon, while I was inside concocting a delicious vegetarian lasagne with rainbow chard, frozen from last year's garden.

Suddenly I heard squeals cries of delight coming from the barista on the deck. "She's pedaling! She's pedaling!" As I came to the door, the barista demanded, "Has she ever pedaled the trike before?"

Well, no, not really. We've tried for several years now. I've duck-walked backward in front of the trike, holding her feet onto the pedals, and she'd go around a few times that way. She'd sit on the trike and propel herself with feet on the ground. But no, she'd never pedaled before.

"Oh, then you have to see this. Look, she was getting her feet onto the pedals and would keep them on when I pushed her... here, Joy, feet on the pedals... and then when I let her go, she kept on going... wait, Joy, can you put your feet back on? Oh, no. Well, she was doing it a minute ago!"

Heh. Elvis rides again.

Kiddio by Kettler
By the way, this is an awesome little trike. It's a Kiddio by Kettler, cost us $40 new in 2005, not difficult to assemble, and still going strong.

Thursday, March 5, 2009

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.

Saturday, February 21, 2009

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.