Thanksgivings

I know several people who are posting daily "thanksgivings" throughout November, either on Facebook or on their blogs.  I didn't take up that challenge, mostly because committing myself to one more daily obligation, no matter how soul-nourishing, would have been -- well, committing myself to one more daily obligation.

But I do believe I could have blogged a Joy-Thanksgiving pretty much every day of the month.  It has been an incredible November!

Here a just a few of the Joy-Thanksgiving events of November.  Milestones, not just inchstones!

Joy's participation in her school music class annual program was more robust than it's ever been.  Her music teacher burned a CD of the songs in the program to send home, and we loaded them up on Joy's iPad so she could listen to them at will.  This year's show was in honor of Veterans' Day, so we had patriotic music mixed in with Joy's usual Baby Einstein soundtrack.  Her favorites among the program were This Land is Your Land (mama approves, even if they didn't include the populist-protest verses!) and a little marching ditty called I am Proud to be an American (not the Lee Greenwood "God Bless the USA" song, thank goodness.)  On concert day, Joy's class was stationed at one end of the risers, so Joy could stand or sit with her staff members next to her class.  She marched in place a little bit in the right place, and waved a little flag, and made it through the whole show.  Proud, proud mama!

Some days later, when GrampaK came over for lunch one Saturday, I was telling him all about the concert and Joy's participation.  Joy was on the couch with her iPad -- and as I told Grampa about the songs on the iPad, all of a sudden the iPad started singing I am Proud to be an American.  Which means that Joy not only followed our conversation and acted upon it, but she also must have gone deliberately to the music-program song list rather than playing Baby Einstein.  Oh.  My.

Then there's this e-mail message to share from one of Joy's school staff the week after the music program, which sent me over the moon for the rest of the workday:

Just have to share my goosebumps delight from the first ten minutes of [Joy] and my day.  Tons of language in context.  No cue prompts.  We sailed thru our multiple tasks and I can't stop smiling.  Wish u had been here to share

That day, something came home that made me smile even wider:  Joy's first homework.  Oh, we've had schoolwork tasks come home before, but they were always framed in terms of showing us what Joy's working on in school, rather than actually being called HOMEWORK.  I was surprised how deeply this affected me -- all it entailed was a square 4x4 grid, on which Joy was to place smaller paper squares, using the terms "take" and "put."  But the importance of it was driven home a week later, when I was asked by another kiddo on the schoolyard, "Does Joy ever have homework?" and I was honestly able to say, "Yes.  Yes, she does."

In the wake of all that, you might guess how much smiling went on during Joy's parent-teacher conference mid-month!  I was surprised to see Joy's team so well represented, having only been sure that the teacher and case-manager would be there, but her student-teacher/SEA and her speech therapist and her occupational therapist were all there too.  So much good news to share, together with ideas for how to tweak things even better!

The best piece of news from that conference, as far as I was concerned, was the piece of construction-paper artwork above Joy's locker.  It turned out that they'd had a class project making construction-paper clouds with rainbow bands dangling below, where each cloud had the student's name and each rainbow band carried an adjective describing the students.  Most students came up with their own, but since that's not Joy's scene just yet, the teacher invited the students to help come up with a rainbow of adjectives for Joy.  She said they were just tumbling over one another with suggestions, and the themes were all directly from the kids.  Here's what they came up with:


Sensitive
Outdoorsy
Technical (they refined this one from "computer-y" in admiration for her iPad mad-skillz!)
Swift
Beautiful
Musical


Even after just a couple of months, my daughter's classmates know her really well, don't they?  Because that rainbow there is an awesome representation.

The LEND trainee who came along to observe the conference was deeply impressed, and we had a fine conversation afterward about the importance of inclusion even when a student isn't in the classroom.  (There's a whole 'nother blogpost in there, my friends!)

But wait, there's more.

This past week, Joy was invited to not just one but TWO birthday parties, together with her sister.  On back-to-back days, yet!  The first party was for a neighbor and the venue was a bounce-house facility.  How perfect is that?  Joy bounced and bounced, and repeatedly tossed a bouncy-basketball up through a basketball net (from the bottom up, rather than making a basket, but who's counting?)  Then after an hour and a half of bouncing and sliding, the kids all herded into a room with tables for cake and ice-cream and present-opening.  And Joy sat down between two kids she didn't know, with Rose a little way down on the other side of the table.  Once we got her served with goodies and lemonade, I went over to the edge of the room and sat on the benches with the other parents.  And stayed there, while Joy competently ate by herself and drank her drink and hung out uncomplainingly!

While I sat, a gregarious dad with a German accent served me cake, and then asked me if that blonde girl in the green shirt was my daughter.  "Yes," I said, preparing for the usual autism-solidarity conversation: is she on the spectrum, I have a close relative who is, etc.  "She looks so much like my niece!" was what I heard instead.  "I did a double-take, she could almost be her twin!"  JUST LIKE ANY OTHER KID.  No disability-related content to the conversation AT ALL.  I can hardly remember the last time I had a conversation with a stranger about my daughter that went that way.

And then we had another party the next night, for a classmate of Joy's, who also has an older sister who's a friend of Rose.  This one was at a gymnastics-sort of facility, with crash pads and climbing ropes and play structures and swingsets and free arcade games like air hockey and basketball.

Joy shot hoops with glee, over and over.  Look at her go!

Among the guests were classmates both past and present, who are happy to interact with Joy but also to give her the space she needs.  Then crowning delight came when we learned that the birthday girl's mom had assembled a special goody-bag just for Joy, full of stimmy-delights instead of the pencils and Blow-Pops that interest her so little.

Daily Thankgivings are hardly enough.  We are grateful beyond words to see our daughters grow and mature and move forward.

May your own celebrations of gratitude be plentiful and delightful!

Music and Speech

We got our piano tuned the other week.  Rose has been making great strides with her piano lessons, making the instrument sing each morning with her practicing -- so we wanted to be sure it was singing in key!  (Didja hear the one about how people keep having to break into song because they can't find the key?  Heh.)

Anyway, the guy who did the turning also plays a variety of instruments but is particularly skilled with the marimba.  He's won numerous awards, plays from a repertoire of over 250 songs, and has performed in Wisconsin's Capitol Rotunda.

He also has autism, and didn't speak until he was eleven.  Now, in his mid-thirties, his list of accomplishments is long.  In his work as a piano tuner, he is accompanied by his mentor, a retired piano tech who supervises his work and helps him stay focused.  His mom, who manages his scheduling, also taught him at home.  By the time we'd completed the whole transaction, I wound up with two of their CDs -- one of his performances, one of her compositions.

Mom's songs, as it turned out, were integral to his education.  Twenty-some years ago, public schools were open to students with disabilities thanks to the 1975 "Education for All Handicapped Children Act" (predecessor to IDEA) -- but in his case at least, they weren't very successful at figuring out how to serve him.  His mother was a kindergarten teacher, and she discovered that what he best responded to was music; that if you sang his lessons to him, the material would actually stick.  So her CD features the songs of his education, created as she put together a music-laced curriculum for him.

Joy, meanwhile, has gotten off to a fine start this school year.  I was concerned that the transition back into school, with a mostly new-to-her team and coming off a late-summer riddled with behavioral challenges, was going to be rocky at best.  But her new special-educator and teacher and student-teacher met with us repeatedly in August, processed the mounds of input we had for them, and felt like partners in the education of Joy before classes even started.

On top of that, Joy has been blessed with musical SEAs (special education assistants).  The past two years, she was met first thing every morning by an SEA who plays drums and teaches piano.  We were sorry to leave that aide behind as Joy moved up to 2nd grade, but simply delighted to hear her new morning-greeter SEA announce, "I'm a singer!"  Joy's affinity for melody and tempo was quickly evident to this new SEA.  We've been hearing updates about Joy echoing little tunes and tapping rhythms.

Then on Friday, she sent home this piece of artwork.

"Song Spots"

Joy, who had never made it all the way through art class before as far as I knew, hung in for a full 45 minutes with her singer-SEA on Friday and dotted this sheet in one marker-color after another -- in time to music.  It sounds like her art teacher got into the act with the music as well.  I know he plays the bass, and the note said "Teacher plays quiet jazz too!"

Teachers have been badly scapegoated lately in Wisconsin and nationwide, and SEAs are even further down the totem pole.  As a Madison teacher-blogger posted just yesterday:

SEAs choose to stay in a career where they are often sworn at, kicked and challenged. They do this, because they care about our children and they understand the importance of their role in our students’ lives. We need to start rewarding SEAs both financially and by treating them with the professionalism they deserve.  Most importantly, we must create school conditions that foster success for the students they serve.

Indeed.

In tandem with the new music delights, we've had a burst of words these past weeks as well.  The speech-settings on Joy's mixer-board are hitting new highs.  I now regularly hear at snack-time, when Joy finishes the first serving of goldfish -- "moh... CACK-uh!"  Not too long ago, when Joy was angling for her iPad (which was busy charging up on the other side of the bedroom door), we got a three-word prompted utterance out of her: "I... want... iPad"!  Heck, just yesterday JoyDad was watching football with her, and was teaching her to raise her arms and say "Touchdown"!  (Next on the list of sports-speak to teach her will be "Go Bears!")

Music to our ears.

And yet, while all this wonderful music and speech and overlap between the two is happening on the home front, down at Wisconsin's Capitol, a new Chief of Capitol Police has been tasked with squelching musical free speech in the Capitol Rotunda.

I've blogged about the Solidarity Sing Along before: red heart balloons, and holiday defiance in the face of an attempted December crackdown last year.  Since March of 2011, the Sing Along has gathered daily to continue expressing opposition to the ongoing depredations of the Walker administration.  This remarkable resistance-movement has been a thorn in the side of the Republican regime since the singing first began.  They tried to squelch us last December with a ridiculous, unconstitutional re-interpretation of Capitol permitting rules, flying in the face of the Rotunda's rich history of being a public square, intentionally designed with acoustics suitable for free political expression.  We showed up by the hundreds in December, daring them to arrest us all -- and, in large part due to the thoughtful leadership of the previous Capitol police chief, no arrests were made and the Sing Along continued.

Now, however, the arrests have begun.  Chief David Erwin, a former Scott Walker bodyguard, has led the Capitol Police in an anti-singer campaign.  The arrests and citations have targeted the people who attend the Sing Along most frequently.  While Erwin gives interviews complaining about disruptive protesters who go around "terrorizing" tourists and Capitol staff, the arrests are for holding signs.  Or banners (like the one held by JoyMama the rabble-rouser in the red coat below).  Or for attending an unpermitted event, or for sections of the Administrative Code that have never been interpreted in this way before. Despite repeated requests for clarification, the Capitol Police are declining to specify what activities might be deemed citation-worthy on any particular day.  They've taken to showing up at people's homes and workplaces to deliver citations, without having approached the individuals at the Capitol at the time of the supposed infraction.  It's intimidation, and they're pairing it with a cynical propaganda campaign that Rebecca Kemble wrote about compellingly in The Progressive the other week: The Two-Pronged Assault on Dissent in Wisconsin's Capitol.

The citizen-lobbyists of the Solidarity Sing Along believe that our permit to lift our voices in musical dissent is contained in the following words of Wisconsin's Constitution (Article 1, Section 4):

The right of the people peaceably to assemble, to consult for the common good, and to petition the government, or any department thereof, shall never be abridged.

"What part of SHALL NEVER BE ABRIDGED don't you understand?"

And if we poke a little bit of fun at Chief Erwin with masks and signs, that too is free speech, a bit of political theatre to bring home our message.  We gather and sing in peace, but we are determined.  We intend to keep singing until Wisconsin is back on the right track.  Even then, we will continue to be involved on a new level.

There's too much at stake -- and my Joy, who delights in rhythm and song, is at the heart of the future I'm fighting for.

See you at the Capitol.

Community Contributions

I dropped Joy off at school yesterday morning in person, as I always do, walking her right up to the doors where the buses for kids with special needs stop. Joy pulls the door open herself... and yesterday she managed to get all the way inside without further help, a new inchstone!

The aide who meets Joy with an animated hug and peek-a-boo each morning hadn't made it all the way down the hall yet, so Joy and I hung out for a bit. As we waited, one of the janitors, a guy who's been at the school at least since Rose was in kindergarten 5 years go, came up behind us. I greeted him by name, he said hi and then came over to Joy. "Hi, Joy!" he said.

"HA!" answered Joy, with the charming little wave of greeting she's developed.

The janitor came close and hunkered down. "High-five, Joy?" he offered and put up his hand -- and she gave it a cheerful slap.

I was delighted that this guy knew my daughter, and took the time to greet and welcome her! As the aide stepped up a minute later, I shared my delight with her. She said that they've been working on the relationship; that he has a regular trash-collection route that takes him past Joy's table at the lunch hour, which is where the regular greeting has been established.

Even beyond the school day relationships with the children, this guy goes above and beyond to be part of the community at off-hours events as well. For example, he comes out for the school's annual fun-run and helps out grilling the bratwurst, just as much a part of the community as the teacher who traditionally leads the "silly warm-up exercises" at the event.

So when I hear things like a certain presidential candidate's recommendation "get rid of the unionized janitors... and pay local students to take care of the school" -- well, here's one unionized janitor that I'm glad to have in our lives.

High-fives for the janitors and their contributions to our school communities!

Lucky

My older daughter Rose and I watched the movie Temple Grandin, starring Claire Danes as Temple, on DVD the other night.

Temple Grandin may be the best-known person with autism in the world. She's a professor of animal science, a wildly-successful designer of livestock handling equipment, and also an author & lecturer on autism. I had the privilege of hearing her speak in the spring of 2010 at the Autism Society of Wisconsin annual conference. (And I got to meet her and get her autograph!)

Rose was fascinated. Very impressed to see Temple's signature on my copy of The Way I See It, inscribed "To [JoyMama]." Amazed at how Claire Danes, whom she'd seen as Beth in the movie Little Women, could become this completely different person. (Temple was amazed too -- as she said at the conference talk, "Claire Danes became me in a way that was really weird!")

Joy wandered in and out of the room as we watched, but Rose was engaged with the movie all the way.

She wondered whether Joy sees the world in any of the picture-flashes that portrayed Temple's thinking, or the superimposed architectural designs.

In the scene where Temple's mother is told of the autism diagnosis and advised to put her daughter in an institution, Rose asked questions and then made the connection with the Where's Molly? story we saw on TV a year ago.

She was distressed by the way Temple's classmates treated her, and shared that she'd seen kids make fun of Joy at school a couple of times. But she allowed as how she gets teased from time to time herself. I pointed out that when Temple was in school, and even when I was in school, kids with developmental disabilities simply didn't get to go to the same schools that typically-developing kids attended, if they even got to go to school at all.

Rose thought about that. "It's so lucky..." she said...
and I expected her to go on to say how lucky Joy is that she gets to go to school with everyone else...

"...for Joy's class that they get to know her and have her in school with them!"

The Fruits of Inclusion

"Is that your daughter?" asked the girl in the swing next to Joy's. She and her friend, about Rose's age both, had been looking over at Joy, trying to figure out what was up.

"Yes, she is," I said from my seat on a nearby low wall, where I was watching Joy lean from the swing and revel in the gravel and shredded tires, all full of happy-noise.

"She's pretty!" was the next offering.

"Thank you," I responded, with some surprise. "Her name is Joy."

"Hi, Joy!"

I'd hoped Joy might reply, since she's done well with greetings recently, but she was too wrapped up in the delights of gravel.

"What is she saying?"

"Right now, I think she's saying how much she likes what she's doing..."

"Does she say any words?"

"Sometimes, but sometimes not."

Then the other girl spoke up, somewhat hesitantly.

"Does she have a... disorder?"

Deep breath. "Yes, she does have disabilities. Do you have any friends with disabilities in your class at school?"

Both girls nodded vigorously. "Yes, we do. But we treat them just like normal."

And the next bit of conversation was just like normal -- and then they said, "Bye, Joy" and ran off.

And as they left, Joy said "buh-bye" with a little wave.

Wide Open Spaces

The pace of my blogging continues to gravitate toward a more widely-spaced output. The to-do list feels long. I keep hoping that I'll move into a good rhythm with the school year -- maybe I just haven't gotten there yet.

Joy got a brand-new wide-open space herself a week ago at school... she's now missing a front-tooth! It's been quite a while since the bottom two came out, almost a year now, so I guess we're due. This one came home a day later than it actually came out. In fact, the news came a day late too! The tooth had disappeared right at the end of a rougher-than-normal day, after Joy's school staff had already filled out her daily log, and it got missed in the brief verbal "how was her day" as well. Her SEA had not been back in the building a minute before I noticed that gaping new hole!

I figured she had maybe swallowed the tooth, and was giving her staff enough of a run for their money that it had maybe gone unnoticed, seeing as how she wouldn't have made a fuss about it... but Tuesday morning we got a belated tooth-loss report as soon as we came in the school door, words-tumbling-over-one-another apologetic! And then by the time I picked her up Tuesday afternoon, the missing tooth had been found as well, and was stowed in a little plastic treasure chest in her backpack.

Doesn't that look like a first-grade smile, though?

The other wide-open space we've been dealing with lately is one that dates back to the beginning of the summer, when we starting having another bout of hair-pulling-out. Over the course of a week or two, Joy managed to create a noticeable totally-bald patch along her nevus-removal scar, even after I gave her a short haircut to make the hair harder to grab. This time I opted not to go the full buzz-cut route, planning to even things up through future haircuts.

But before we got as far as haircutting, another space-within-a-space opened up. I think it might have started as a mosquito bite right on the scalp-scar, that Joy scratched open the way she generally does with mosquito bites. Long after the summer bites on her legs healed, the one on her head was still open. For a while she semeed to be scratching it for stimmy-delight, then it turned into a self-injury frustration lash-out thing. (What, I can't get through that forbidden door? Well, SCRATCH MY SCAR!)

Scratch after scratch, the start of the school year was approaching and the wound was getting bigger instead of smaller. Complicating the matter was our long-standing experience that band-aids only draw further attention to any boo-boo, by encouraging picking. So we knew that putting on a band-aid would just make things worse.

Except -- the other thing that we might have remembered is that Joy's mixer-board switches do tend to flip between settings, from time to time. After a few days of school and a Labor Day weekend full of scab-scratches, I finally decided that trying a band-aid couldn't be any worse.

She left it on for a couple of days. Long enough to begin a cycle of some healing... it's been three steps forward, two steps back since then, including a resumption of unwillingness to wear the band-aid, but we've been making progress. Perhaps by the time the hair grows back, the wide-open space will have closed again for good!

Go Jump in a Lake!

I guess if one's child is going to be driven by an unspoken imperative to "Go jump in a lake!" it's good to have a beautiful lake to jump into.

The JoyFamily returned on Monday from another long-weekend jaunt to the family cabins in the Upper Peninsula of Michigan. I'm pleased to report that our trip home was nicely uneventful, in contrast to our Memorial Day mudbath. The vacation itself was free of marauding ruffed grouse, and nary an exploding shower pipe was to be found.

The big novelty of the trip was the company of AuntieS, who hadn't been up to the lake in 3 decades. It was such a treat to have her there, I didn't even mind "letting" her win a round of dice the last night we were there... Besides, she took pictures! (Photos below are courtesy of AuntieS).

For Joy, the top-priority draw this visit was the lake itself. We hadn't been in the cabin five minutes, just beginning to unload and unpack, when we suddenly heard the lake-side screen door slam and Joy was hurtling down the steep embankment toward the pier. How she kept on her feet the whole way down, I'll never know -- I'm not even sure how I managed to stay upright in pursuit. I caught up with her at the last second, just as she paused at the far end of the pier before launching herself into the drink.

In past years, we've been able to sit on the pier and play little games, or swing on the rickety metal swingset between the cabins, or hang out happily for hours on the screen-porch overlooking the lake. Not this time around. Some switch on Joy's mixer-board had assumed a new setting -- the "Go jump in a lake" setting. Being in sight of the lake without actually jumping in? Not to be considered.

Fortunately, the weather cooperated for lake-splashings every afternoon we were there. Summer is waning up north, but by afternoon the sun had always warmed up the air and the lake enough for a swim.

The first afternoon, we splashed both off the pier and with the rest of the family off the side of the pontoon boat.

The next day we learned to float tummy-down on a little inflatable life-ring toy.

The third day, Joy discovered the delight of driving her hands down into the muddy sand of the lakebed. That was so much fun, she was even willing to dunk her head under when we went into slightly deeper water, for the joy of that sloppy lakebed.

We had other fine moments as well: unusual success at going for walks down the woodland roads, and playing with ferns WITHOUT consuming them, and an unusually calm ride home.

Gorgeous weather aside, this was not really an ideal weekend to upset the Joy-routine with a trip to the lake. We've had fruit-basket-upset with our therapy staffing and schedule and location through the course of August, with changes still happening. Then our summer childcare arrangement came to an end mid-August, leaving us patching together the last two weeks. And then the crowning routine-buster -- the start of first grade, with shortened days both Thursday and Friday, and a new teacher and case manager.

Since I didn't get this written before Day 1 of school actually happened, I'll let you in on the first day's outcome -- Joy's two main special education assistants are with her again this year. The first day of first grade was not at all like the traumatic first day of kindergarten. Not without some stress of course, but overall a big relief to everyone involved. Onward to Day 2!

Joy Rocks the Field Trip

The end-of-year field trips are flowing thick and fast around here. Several times while I've been down at the Capitol in the past weeks, I've seen gaggles of kids going through the (in-defiance-of-court-order) metal detector screenings to get into The People's House. Rose will get her turn to visit with her class this coming week, though given our spring-break advocacy, she's already got some experience!

For Joy, the whole field trip thing has been a different story.

The field trips for her kindergarten class started way back this fall when we were still struggling to make it through the day without injury. Technically we would have been within our rights to demand that Joy's school personnel find SOME way, ANY way, to take her along on each and every field trip. However, we also prefer to avoid putting people in unwinnable situations. Sooo many field trips involve standing in line, waiting, lecture situations, sitting through performances. They're generally things that Joy wouldn't... well, enjoy... and I wouldn't attempt with her myself, even in the absence of the crowd-control aspect... so why would we make Joy and everyone else miserable by forcing them to go through it?

But finally with the end of the year nearing, her classroom teacher sent home a notification in the class newsletter that made my eyes shine. A field trip to a kiddie gymnastics facility!

I made known right away that I thought this field trip had "Joy" written all over it, and her staff agreed. There wasn't even much advance prep to do, at least that I knew of, other than the fact that she needs one-on-one supervision both in school and out. Joy has been generally cooperative on city bus rides, so I didn't think the transportation would be a problem.

Friday was the big day! And when I came to pick Joy up at the end of the day, when her classroom teacher came leading her classmates out of the building, he gave me a great big grin and high sign. "It went great!" he said! Sure enough, when her special-ed teacher brought Joy to the doors, she confirmed that it had been a grand success. Joy had sat independently on the bus on the way there, gotten her wiggles out enthusiastically at the gym, and snuggled happily on her aide's lap on the bus ride home.

Rose told me later that when she'd seen Joy & her aide in the hall that afternoon, the aide told Rose that she wished they could have something like that for Joy every day!

It's hard to believe that we're just a couple of weeks from the end of the school year. Joy will turn seven soon, and she'll be done with her kindergarten year. I'm just so pleased that she got to have a successful field trip to help round off her first year of elementary school.

Every Child Will Participate

We're all swatting at the same mosquitoes
Eating burned-up burgers
At the picnic of the world.
-- Tom Chapin, "Picnic of the World," to the tune of the CanCan

It was an ambitious project. I first heard about it at a PTO meeting last November -- Joy & Rose's school had won a grant to host a dance residency in January. For three intense weeks, a university dance professor and one of her doctoral students would swoop into the physical education classes, teaching grade-appropriate dance curriculum while choreographing (with major student input) an hour-long all-school performance.

"Every child will participate," said the principal.

I raised my eyebrows. Even the non-verbal second-grader with CP who relies on staff to wheel her chair around? Even Joy, who follows very few directives and has trouble with noises and large groups of people?

Come January, though, Joy's staff was ready and willing. PhyEd is one of Joy's best bets as far as being in class with her peers, and her gym teacher and special educator collaborated with me on how best to make the experience successful for Joy, and the initial dance-class sessions went reasonably well. We hammered out a plan whereby Joy would participate in only the first of two evening performances, with her trusty special educator at her side the whole time. We cancelled Joy's therapy for the evening of the performance, re-scheduled Rose's piano lesson, and went second-hand-store scrounging for the right color of shirt for each of them to wear. Brown for Joy, yellow for Rose.

The first hint of trouble came from Rose. She wasn't enthusiastic about the dance residency from the beginning, and ramped up the complaints as the performance neared. It's too chaotic -- this isn't coming together -- we don't know what we're doing -- everyone is SCREAMING in the gym, it gives me a headache!

Uh-oh.

Then on the day of the performance, the whole school had dress-rehearsal all afternoon, first class-by-class, then as an all-school group. When I came to pick up the girls at the end fo the day, one mama (who had come to see the rehearsal) told me that Joy had danced and done just fine. But then out came the special educator with a teary-eyed Joy, and gently told me -- the performance might not be such a good idea. As long as Joy was sitting on her lap in the noisy chaotic rehearsal, it was at least manageable. But when she and her group were "on," Joy had been frustrated, tearful, lashing out. Her special educator had had quite a dance herself, trying to guide Joy through the motions while anticipating and blocking all the other-directed acts-of-ow. It wasn't fun for anyone, just an unfortunate spectacle. (That last was my summing of the situation, not her words!)

One on level it felt like the first days of kindergarten all over again. All that prepping, all those plans, lost in a whirl of tears and frustrated injurious outburst.

On the other hand, I've had some practice now in adjusting expectations on the fly. Plus Joy's special educator was great. She was willing to hold and sing to Joy through the whole performance if we wanted, or to care for her in another room while we watched Rose perform. We decided, though, that Joy would be happier at home, and did a parental tag-team instead: JoyDad went to the first iteration of the show that evening, I went to the second.

It was entirely the right decision.

The gym was way overcrowded, and noisy, and hot. This stood in contrast to the outdoor temperatures which were plunging toward zero and beyond! By the second performance, the one I saw, even some of the NT kids were tired and teary. SO not Joy's scene.

The show came together really well, though! They were working on the school's motto, the theme of "Growing Strong." Then they divided it into four things you need to grow strong: sleep (kindergarten), shelter (first-graders), food (2nd/3rd graders), and clean air (4th/5th graders). Then each division had a wide latitude for interpretation. Joy's class, for example, had learned about Great Horned Owls -- sleep, night, owls... toldja it was widely interpretive! -- and moving with bodies held tightly and loosely. Best moment: watching the kindergarteners pounce and consume their prey, and then mimic regurgitation!

Rose's class, on the theme of food, went with a Picnic of the World dance. Their movement goals included African dance forms and cross-rhythms, which brought in the international component. Then for the picnic/food component, they split into small groups, each of which designed its own dance moves incorporating a picnic blanket.

Rose's complaints about the dance residency vanished for the performance. And I realized I didn't have much to complain about either. Joy had gotten the benefit of the instructional part of the residency, really quite a neat experience in itself, and Rose got to perform (which she loves to do, even if she couldn't articulate one single thing she'd learned from the dance residency.) Each child participated on her own terms, and at the end of the day, I guess that's really what it's all about.

We're all knowing at the deep-down heart of it,
We're all a part of it,
The picnic of the, picnic of the, picnic of the world!

Tagged, Redux

I've circled back to blogging about tagging several times now. My first Tagged post was about Joy's Project Lifesaver radio tag, for tracking purposes in case she wanders. (Now that she's in kindergarten, we're extra-glad to have that safeguard.) Just lately, I succumbed to the lure of tagging via blog-meme.

Our latest new form of tag in the JoyFamily is a disability hang-tag for access to priority parking spaces.

Parking lot safety for Joy has long been a concern of ours, but the possibility of a hang-tag didn't really click for me until I had a conversation with Joy's special educator about dropping Joy off at the start of the school day. I've got my work-schedule arranged so as to be able to do both drop-off and pickup for the girls at school, so we aren't taking advantage of the "short bus" that drops kids right by the back door. If you don't bus, parental drop-off is on the far side of a busy street, with a walk either up or down-hill to the crossing guard. As an alternative, Joy's special educator mentioned that some parents do a quick drop-off in the handicap spots. Of course, for that you need official dispensation.

Earlier in our journey I'd have had more of an internal debate. ("But she's not handicapped -- she's just delayed a little -- we don't really need this -- why mark her as more different than she already is" -- etc.) At this point, though, I've learned to agonize less over taking advantage of available resources and designations that can make our lives easier. The application for the tags was a simple form, just a download away. It needed a physician's approval, which Joy's doctor gave easily on request. Two hang tags soon arrived in the mail, one for each car's glove compartment.

So far, I have used them sparingly: only at school, and only at drop-off. In general I'd prefer to have Joy learn to walk with me and her sister and the other kids. Sometimes we make it the whole 15-minute walk home! However, if there's rain and puddles, or new snow, the walk becomes too much of a stimmy distracted battle. It's exhausting, not entirely safe, and sets up a miserable mood for turning Joy over to school staff. So on those days, out comes the tag and we drive practically up to the door.

I haven't yet used the tag in a public parking lot yet, but I sure feel better knowing we have the option. Parking lots can be scary-rough -- there was a set of helpful parking-lot tips the other day at Stuart Duncan's blog with suggestions for the situation. (I added the hang-tag suggestion in the comments!)

It has crossed my mind that, with Joy's invisible disability, we might come in for some pushback from the self-appointed parking lot police -- the folks who see fit to call challenge if they see someone they don't think looks disabled get out of a car in a handicap-accessible spot. I was reminded of this yesterday when Rachel posted at Journeys with Autism about the barrage of doubt and disbelief that people with invisible disabilities often face. She mentioned one woman who developed a snappy comeback for the doubters: when someone issued a "you don't look disabled" parking lot challenge, she'd fire back, "And you don't look like a doctor!" (Rachel's post and the comments were much more detailed and nuanced than this little example; well worth the read.)

I gave a quick delighted high-five in the comments about that comeback -- it's so the perfect response that you wish you'd thought of at the time! I've been re-thinking my enthusiasm somewhat, though. It strikes me that if any parking lot pushback were to come our way, I'd rather be prepared with a gentle, educational answer than a snappy zinger. That way if the challenger turns out to be a well-meaning soul and open to new ideas, I might be able to send them away thoughtful rather than cranky/defensive. And if they really deserved the edgy comeback after all -- well, then I'll have been nicer to them than they deserved. Which wouldn't be so bad.

I should make clear that my re-thinking is in no way meant as a prescription for how I think everyone ought to react to a parking lot challenge. Just my own thoughts and planned approach. A person with an invisible disability who has had it up to HERE with spending precious energy trying to educate people who won't listen anyway -- may well choose a different approach entirely.

The snow has been falling all day today. Glad we've got that hang-tag for tomorrow.

Included: Rewards at School

At the beginning of the school year, before the craptacular spectacular transition issues, we'd discussed with Joy's teacher his system for rewarding good behavior. Each child has a star-chart, and during the course of the day he publicly awards stars when he "catches" a child behaving well. The charts live in the children's lockers, and when they fill a chart, they get to go "shopping" at the special reward-shelves for a book to take home.

We'd originally contributed some board books (more expensive than the usual paperback rewards) for Joy to take part in the system. But then with Joy not in the classroom much at all, and having the reward so far removed from the good behavior, on top of the rough way she treats books... she ended up getting more immediate small rewards instead, and just not participating in the classroom's system for the first weeks.

Until I was volunteering in the classroom one Monday. One dear little girl went out of her way to tell me that Joy was doing well (bless her heart!) But a young fellow at the same table wanted to make sure that the record was set straight -- or maybe he just liked "telling"? Anyway, he swiftly pointed out that maybe it wasn't so great after all, because Joy never got to go book-shopping.

So I took this perspective to Joy's team -- that, even if the reward system is not perfectly set up to be meaningful to Joy, the other kids are noticing and her participation (or lack thereof) has meaning to her classmates. They immediately agreed to make a change. Now Joy gets stars like the other kids, no matter what level of meaning they may or may not have for her. And if she's not in the room much that day, her aides make a point of coming to the teacher and announcing audibly that Joy should get stars for thus-and-such she's done OUT of the room.

The first full star-chart that came home with a board book brought tears to my eyes. Her teacher had signed it with the message, "I'm so proud of you!"

One! One Wonderful Blessing! Muah-ha-ha!

Good grief. According to my hit-count stats, someone actually came and visited Elvis Sightings via a Google search on "horrid kindergarten transition stories"!

It's probably just as well that I held off on posting during the long weekend. I wasn't very good company -- I'm glad that we're on to the second week of school here.

Day Two of school, Thursday, got off to a better start for Joy. We avoided the noisy playground and the teacher had altered the routine such that snacks were not out on the tables. I learned later that Joy had actually managed to hang with the class for the gathering time, and got to use her GoTalk for sharing time and to indicate that she'd brought a bag lunch. But then she started getting warm and lethargic -- I got a call late in the morning that she was running a low-grade fever. I requested that they feed her lunch and call me if things got worse, and didn't receive a second call, but only because she'd crashed out at naptime and they didn't really get her up until time to go home, because it was a shortened day. Her fever at that point had climbed to 101.

Day Three, Friday, I stayed home with her. The lethargy had passed, the cranky took its place. We had varying levels of cranky all weekend long, with lots of swipes and bangs and hair-pulls (particularly on Rose, poor kiddo). Not a good weekend for me either, especially compared to how energized and excited I was at the beginning of the semester last year.

Today was better. And I think it's time for a blessing count.

1) Joy made it through a full day today, no calls to work. She even made it to music class with her classmates, and hung with it much longer than I'd have expected.

ONE! ONE WONDERFUL BLESSING!
MUA-ha-ha-ha!

2) When I went to pick her up, she wrapped me in a huge hug while her aide filled me in.

TWO! TWO WONDERFUL BLESSINGS!
MUA-ha-ha-ha!

3) We invited friends we ran into on the schoolyard for an afternoon playdate. Joy was laid-back, happy, giggled when playdate-dude came popping out to say "peek" at her (rather than yowling and swatting at him)!

(OK, you can fill in the count in your own mind from here.)

4) I'm so fortunate that I got to experience an ideal kindergarten transition, three years ago with Rose. Rose was so ready for kindie when her turn came. Huge grins in her first-day photos, no tears either from her or from me. Pretty much as smooth as it gets.

5) I managed a bike-commute home this afternoon in the face of wind-advisory-level winds. I am bike-commuter, hear me roar! Plus I realized that coming home at 2:30, I'll not have to worry about the encroaching darkness that traditionally has made me put my bike away for the season when we "fall back" for Daylight Savings. I can actually wait for the snow to fly!

6) Zucchini flowers. Which turn into zucchinis. Which turn into zucchini bread with mini-chocolate chips. Yum. (Can you spot the actual zucchini in the photo?)

SIX! SIX WONDERFUL BLESSINGS!
MUA-ha-ha-ha!

Transition

I've got a whole list of posts swirling in my head to write -- I guess I ought to at least get something written, and maybe the rest will fall into line in the coming days.

It's interesting -- in the world of developmental disabilities and special education, the word transition has come to have a specific meaning: it's the big Transition from school out into the adult world. There are transition-planning manuals, and transition-planning conferences, and transition-planning laws (in Wisconsin, for example, transition planning has to start in the IEP team at age 14, and at that age the student must be invited to participate as a member of the IEP team.)

Heh.

We've got a huge transition going here, folks, but it's into school instead of out of it.

Transition-into-kindergarten planning for Joy started a couple of years back, when we made the decision to wait an extra year, so that with her early-summer birthday she'd be one of the oldest kids in the class instead of one of the youngest. Back in February, I described the steps we took to get Joy some formal kindergarten practice, spending several hours of each Tuesday afternoon at the school with her early-education therapists.

In April, we had a big summit at the elementary school to put together Joy's IEP, the Individualized Education Program that spells out goals for the upcoming school year, and what services she'll receive that will help her work toward those goals. Looking back now, I guess I never did blog about that meeting. It was a huge meeting -- Joy is going to have a LOT of staff working with her. She's going to have one-on-one attention all the time, safety reasons being paramount but also because that's what it's going to take to work with her in a classroom -- and the school district seems to have quite the commitment to working with kids in the regular classrooms, as much as ever possible.

So far, things seem to be falling into place pretty neatly. Joy was assigned to the teacher whose classroom she got to know in the spring, a fellow with a gentle demeanor who has been assigned clusters of kids with IEPs for the past couple of years. One of her (typically-developing) classmates will be from a family we're in good contact and on good terms with, so that's a fine development. Her special-education lead teacher has had the chance to visit her at daycare for a couple of hours, and will be visiting at home the day before school starts to get acquainted. Joy has had a couple of visits to school, seems comfortable in the classroom (at least when there aren't any other kids there, heh), got to meet the new principal, and got to try potty-routine in the hall-bathroom.

We've got another summit with school staff coming up Monday, not an IEP meeting but a chance to share a home-grown document full of details about the amazing progress Joy has made over the summer, and tips for lunch, and a list of the songs she knows and can fill in words for.

And a list of the new challenges. There are some big ones, and it's more than a little scary.

The top two are: head-banging, and hitting/hair-pulling/pinching of peers and adults.

Just what you want your kid to develop in the months before kindergarten, no?

I think I'll just leave that there. These are switches that we desperately want to flip the other way, as soon as possible. A new environment and routine might do just that -- or it might escalate these behaviors to whole new heights.

Meanwhile, this is all quite a major transition for me. I wrapped up my summer-job yesterday, so I will truly be going back down to half-time again, as opposed to the 75% time that I've been squeezing in for close to a year. All those work hours will now take place during school hours, so I can do drop-offs and pick-ups for both girls at school, and eliminate the need for after-school paid care. A very different routine for me.

Think good thoughts for us. This transition may not be THE big one, but it's pretty much the biggest one so far.

Rose Anticipates School

Summer lasts a little longer here than in many states -- thanks to the tourism lobby, Wisconsin public schools cannot start till September 1 or after Labor Day, whichever comes first. So our first day is September 1. This is bigger news than usual, because it'll be Joy's first day of kindergarten!

We've never been sure how much Joy "gets" things that are coming in the future. It may start to feel more real when she gets a sneak-preview school visit next Tuesday. Rose, however, is a great anticipator. She's all excited to learn for sure at registration this evening who her 3rd-grade teacher will be (it should be the same one that she had for 2nd grade, but it isn't guaranteed).

She's also mighty excited that her little sister will be joining her at the elementary school in two weeks.

We talked about it in the car yesterday morning, after dropping Joy off at her daycare.

Rose is particularly pleased that the 3rd graders and the kindergarteners share lunch hour and recess. Joy's presence benefits her for lunches especially; we've been making Rose take her chances with the hot lunches, which she usually doesn't much care for but she knows that it's her own choice and if she doesn't eat, she'll just be hungry. With Joy, we can't ask that of her, nor can we inflict the consequences of a cranky-hungry Joy on her afternoon staff! So I'm going to make sack-lunches for Joy unless they have something awesome like pizza on the menu. Which means that Rose gets to carry her lunch too, because that would be just too unfair otherwise. Woohoo for little sisters!

We also imagined together a little bit about what recess will be like. Rose reflected that she usually comes out of the building together with several close friends, whom she named. But, she assured me, the first thing she'd do is go over and greet her sister, and make sure that her friends did so too.

Then she thought a bit... "I usually play foursquare and Joy won't do that so I might not play with her so much." I mentioned that one of the things Joy loves to do is swing on the tire swing, and that maybe they could start recess by swinging together. The tire swing is a highly desirable piece of equipment, and kids line up to take turns both riding and pushing. Rose mentioned that maybe she could line up and push when it was Joy's turn to ride. I countered that it might be nicer just at first if she'd be willing to help Joy stand in line and ride with her.

"Well, I do love Joy," she said. "So I'll do whatever."

You and me both, sweetheart. Whatever it takes.

First Day of School

It was a beautiful winter day, temperatures just below freezing, a couple of inches of new snow making everything look very white again, just a few lazy flakes floating down.

I got Joy all dressed up in coat, snowpants, boots, L-Bow mittens... and backpack! Joy and I showed up at 1pm at the back door of the school where the kindergarteners enter. Her occupational therapist was waiting for us, to take us just a few feet into the hall to Joy's new locker. It was all prepped with a laminated name-plate just for her, decorated with a dragonfly that matches the one on her new purple backpack.

Have I mentioned yet that I love Joy's itinerant school-district team?

Getting all those wraps off and into the locker is quite a task, but since there's no crush of kiddos in the hall at 1pm, Joy has plenty of time to work on it.


Next step was a hand-in-hand trek through the halls, up and down stairs (deliberately the long way around for practice' sake) to the OT/PT room. Which has a swing hanging from a sturdy hook in the ceiling, oh bliss, oh Joy! First she went swinging in a stretchy-sling-swing that enveloped her entire body -- something she hasn't had access to for several years. It felt so good, she kept signing for more. Eventually we lured her out with a "first-then" statement and the opportunity to play with a little mirror while the OT changed the swing to a platform.


I had intended to head home after I got Joy settled, but it was such fun seeing how this all worked that I ended up staying the whole time.

After a whole lot of swinging and a little bit of table work, it was time to switch to the next staffer, Joy's special-educator, who took her to meet the gym teacher and then into the gym. Which was totally empty, so we could shut all the doors and run and play at will. Much delight!

The gym time ended with the need for a diaper change, so I got to see the facilities for that too. Fortunately there's another girl in a class on the kindergarten end of the building who already has a changing room set up in the accessible stall of the girls' room, so no new arrangements need be made for Joy.

During the diaper change I got to go talk to Rose's teacher while their class was out to recess, lining up for next Tuesday when Rose is person-of-the-week and I'll come to visit. I don't quite know what we'll do but now we know when and how long we'll do it... and that the time will finish off with a visit from Joy at the end of her "school day." It will be a splendid opportunity to make introductions, have more kids recognize Joy and be able to look out for her and greet her.

After the conversation, I joined Joy and her teacher in a nice windowed room at the back of one of the kindergarten classrooms. I was expecting it would be a place for one-on-one, but was delighted to see that the kindergarteners were having a free-choice time and that three other little girls had chosen to play back there with the new girl and her staffer! They were so sweet and matter-of-fact and pleased to take turns with Joy stacking pegs, and bring her play-food to pretend-eat, and pop bubbles with her, and sing "Wheels on the Bus." It was pretty obvious that these were kids who were used to differences, and were eager to tout their own diversity as well... one of the three made sure to let us know that "I'm Korean -- I mean, I'm half Korean." The whole encounter was just so sweet and accepting!

Then we got wraps back on, and went out to play on the playground for the remaining half hour before the end of the school day. During that time, two gym classes on snowshoes came and went (don't you wish YOUR school taught snow-shoeing for winter gym?) The gym teacher called out to Joy as they went past, and so did a couple of Rose's friends.

Joy was pretty tired out, and a little out of sorts at dinner, but managed to turn on at least some energy for her barista-dude in the evening.

What a spectacular first day of school. We are so blessed.

Easing Into Kindergarten

Longtime Elvis Sightings readers will likely remember that we decided to have Joy wait an extra year before starting kindergarten. With her early-summer birthday, Joy won't be all that much older than others in her class, and we really wanted to see what additional communications gains we could make in the extra year.

Well, we've got a school-district team that really helps us put the "Individual" in "IEP." When we put together the plan last year, we decided to do a mid-year modification to get Joy into the school building for at least some portion of her itinerant therapy during the second semester, to build some familiarity so that kindergarten won't come as such a total fruit-basket-upset.

The time has come. As of this coming Tuesday, Joy will spend a couple of hours each Tuesday afternoon in kindergarten practice. At the school.



The schedule looks something like this:

• 1:00 Joy to arrive at Kindergarten doors (through playground)
  OT meets her for locker routine -- removes boots & coat, hangs coat and backpack in locker [she's got a LOCKER!]
  
  
• 1:10 Joy to walk hand in hand through hallway and stairs -- end up at OT/PT room
  
  
• 1:15 Sensory activities in OT/PT room
  
  
• 1:30 Concentrated fine-motor activity -- sitting at table for stacking, cutting, drawing, etc.
  
  
• 1:45 Transition to special educator -- in gym or continue table tasks in OT/PT room
  
  
• 2:15 Hand-in-hand walk in hallway to block area in Mr. M's kindergarten room for table tasks from bag of familiar tasks.
  
  
• 2:35 To locker to get on boots, coat, backpack.
  
  
• 2:45 Leave with JoyMama.

I'll have the option of either staying at the school and volunteering in Rose's classroom or the library, or heading home for a bit of get-stuff-done time. One neat opportunity that comes up quickly -- Rose gets to be person-of-the-week around her birthday the second week of February, and she's really excited that I'll be available to come celebrate and that I can bring Joy to meet Rose's classmates after her Tuesday activities!

Hard to believe that my baby is really going to school. This coming week. Wow.

Generation Gap

JoyDad and I had the privilege of attending Rose's 2nd/3rd grade music program at her school yesterday morning. The music teacher had built the program on the theme of "Mexico," connected to a social studies unit they'd all just finished. The entire show was bi-lingual, giving the Spanish-speakers a chance to shine and the English-speakers an exciting learning challenge. They even had a seasonal touch, a song from the tradition of "Las Posadas" which re-enacts the procession of Mary and Joseph from door to door in Bethlehem until they finally find shelter and welcome. It was very well done, and of course the sight of my first-born up there singing and moving so enthusiastically brought tears to my eyes!

After the program, I got a chance to visit Rose's classroom, something I've not been able to do this fall during school hours with all my LEND overload.

She'd talked several times about a certain little fellow whom we'll call "R" who sits near her and is apparently "in love" with her. When she speaks of him, I've thought I hear a sense of being flattered, but mostly buried under words of annoyance. Was looking forward to meeting the kid, and prepared to be kinda charmed -- puppy-love and all that, so cute!

And in her classroom I did meet R, and he is indeed a cutie, bright eyes and big smile and full of energy.

Then he spoke to me.

"Hey, are you Rose's grandma?"

GRANDMA?!?!

Rose, sweetie? Feel free to be annoyed. I won't discourage you in that stance, not one little bit!

You're Always Doing Something

You're always doing something,

said seven-year-old Rose to me yesterday morning.

(She was home from school due to teacher's-union conference; I was home because Joy's been under the weather, so it couldn't be a babysitter day.)

I'd been swirling around picking up shoes, vacuuming, rinsing dishes, re-allocating piles of paper, my usual morning flurry. I thought for sure this was a comment on my swirling, and wondered if she thought it was a good thing or not.

"What do you mean, honey?" I asked.

"Well," she replied, "Even if you're trying not to breathe and stand as still as you can" -- and she demonstrated -- "you're still doing something, because you're trying not to breathe and stand as still as you can."

She's right. No matter whether you're in full swirl mode, or laid back as can be, you're always doing something!

So, here's a little bit of what we've been doing the past few days.

As I mentioned, Joy has been sick. There was a fever going around the daycare the other week, and we thought she'd escaped, but it seemed to hit her later and longer than the other kids. I was all edgy about H1N1 because she's on the fragile side as far as the co-morbid conditions that seem to go along with the swine flu doing its worst, and she hasn't had the vaccine yet (she's got an appointment today!) But it was just the fever, none of the awful cough and other stuff. She was considerably perked up yesterday and I think we'll have a pretty normal day today.

Speaking of doctor's appointments, I did take her in on Wednesday when the fever seemed to be lasting longer than it had for the other kids, for an ear and throat check since she can't really tell us when those are hurting, plus her pain tolerance is so high. When I got in the car to make the half-hour drive across town, it started making a roar like a Harley. (OK, I know the Harley roar is so distinctive it's patented. But a Honda CR-V isn't supposed to sound even close to a Harley.) The muffler had gone out. So I had to drag Mike home from work to take that car in, and provide me with the other car. Arghh.

I did get to take advantage of a beautiful fall day on Tuesday to put Joy in the stroller and take a run, though. Ordinarily I can't do that because I'm home with her while she's got therapy, but there's no therapy when she's got a fever! The weather has swung between gorgeous and cold-n-rainy, and the leaves have gone from full-peak to mostly-on-the-ground this week. Halloween should be fair and chilly. The girls are going to be black and white Dutch bunnies, as specified by Rose. It did involve some homemade fleece hats with bunny ears made of pipe-cleaner and felt, and I taught Rose how to make pompoms out of yarn so we could have the tails exactly the right size and color. Like I have time for all that! but Rose was very appreciative. Now I just hope that Joy will keep her hat on when we go door to door!

Here is a little bit of autumn eye-candy, taken from our windows front and back.

Here's our burning bush and spirea out the front.

We think this is a Cooper's hawk. Rose had a great view of it from her bedroom window; it sat on the feeder for a long time, which gave us lots of chance to pore over the possibilities in the bird-book.

Time for me to go do my next somethings of the day.

My Brain is SO Full.

The past two days have been amazing.

Those who have been following the continuing saga here will know that just a few short weeks ago, I learned about an exciting program at the university here. It's an interdisciplinary leadership training program, funded by the federal Maternal & Child Health Bureau, going by the acronym LEND, which stands for Leadership Education in Neurodevelopmental Disabilities. Turns out there's a whole network of these LEND programs. The point of the program is to catch up-and-comers as they're training for professions working with people with neurodevelopmental disabilities. Our group of 27 includes occupational therapy, speech therapy, physical therapy, public health, audiology, genetic counseling, nutrition, social work, psychology, and "family support" (parents and other family members). These people work together with the immense resources of the university's center for neurodevelopmental disabilities, devouring the smorgasbord of content, linking up with experts, pursuing leadership goals and projects and advocacy, being mentored by families in the community.

I am stunned that I am to be one of these leaders. But oh, how right it feels.

It's very encouraging to see what future leaders (guess I should say "we," huh?) are being taught. The very first slide of the first presentation of the two-day orientation started out with a series of photos -- the world, our continent, our state, our city, the university, our center's buildings. The point was: we're starting here... to change the world!

Here's a mantra worth remembering: Family-centered, community-based, culturally-competent, co-ordinated care. (How many of us have that, blogfriends? Who do we see in our communities who doesn't have that? What would it take to make that ideal a reality?)

We got a whirlwind overview of some federal disability-legislation highlights in the past 40-plus years, together with the observation that many big changes had their roots in parents seeking better lives for their kids...

We were given a case history of a family who might come to the center for a diagnosis, and met in groups with professionals from all our different disciplines who spoke briefly about their field and what their field might be able to bring to the diagnostic process and the interdisciplinary team that might work with this family...

I'm in a much better place for taking advantage of conversations than I was in my library-grad-school days. Back then I was mighty shy. Quiet. Not the one hobnobbing with the faculty, or even my fellow-students like I might have. Well. The "me" of the early 90s would hardly recognize the woman who was doing so much conversing during the breaks that there was barely time to eat!

Just one example of my high-powered classmates in this endeavor -- struck up a conversation with a gal sitting next to me in a presentation, established that she's going to be on my interdisciplinary team (autism-focused, woohoo!). Her field is public health, she's very interested in policy and advocacy, and she's actually been sitting in on the meetings with the Insurance Commissioner's office that's hashing out the rules for how Wisconsin's new autism insurance legislation will be put into practice! Is that an awesome inside source, or what?!

The last half of Thursday's orientation was to the center itself, the entity within the university that brings the focus and the education and the research to neurodevelopmental disabilities. We got a high-powered overview and then a tour of various research labs. My group's last stop of the day was in a first-floor room with a foot-and-a-half thick concrete door, that held a proton-accelerator with which that particular brain-imaging lab made its own radioisotopes for use with PET scans. Good grief. Me and my best buddy the proton accelerator!!!

My brain is so full.

Yesterday afternoon had another powerful component though, that spoke to another part of me.

First was the introduction to the center. I hadn't known this, but the entity has the imprint of the Kennedy family all over it. The initial funding came from Joseph Kennedy Jr.'s foundation. The presentation included a telegram from President Kennedy, congratulating the fledgling institution and confirming that Senator Edward Kennedy and Eunice Kennedy Shriver would be attending the opening gala... Oh, how they will be missed! And. The telegram was dated November 20, 1963. Just a couple of days before John F. Kennedy went to Dallas. Oh my.

And then. There were images in the presentation of a sweet girl who used to be in Joy's daycare, who later went to the daycare at this university center. An inspiring child and family... she has proved nay-sayers wrong again and again about her challenges.

Then there was a panel presentation with parents and also a high-school girl who has disabilities herself. The young lady stole the show. Speaking was not the easiest thing for her... she had a timed PowerPoint presentation full of lovely photos with short captions and was having trouble reading the captions before the thing switched to the next photo. After she started over several times and was getting visibly frustrated, someone came up to try and help her. She shooed the adult away, and eventually made it work herself!! She and her sister run a jewelry business together, and she enthusiastically sold us her wares afterwards during the break... gonna wear my new earrings at next Friday's seminar...

Here's a quote from one of the parents, who has a son with autism and a typically-developing daughter. "When my daughter said her first word, it was wonderful. When my son said his first word, it was heaven."

I'm tearing up just typing this. You can bet I was weeping during that panel.

Oh yes, my brain is full. So is my heart.

Random Tuesday Thoughts

It's been a while... the randomness has been building up... it's time for another edition of Random Tuesday Thoughts!

• What a beautiful morning for a pre-dawn run! I am back to being able to slow-jog a full 5K. Emphasis on the slow.
  
  
• JoyDad is running too. I think the last time we were both doing the running thing was back during my fire-eating, bridge-jumping grad-school days. Except that now we have to tag-team. Can't leave the sleeping kids alone in the house and all.
  
  
• Hey, maybe these ARE my fire-eating, bridge-jumping grad-school days again. Y'think?
  
  
• One week from today, Rose goes back to school -- as a second grader. Woo hoo!
  
  
• Tomorrow, I go to my first day of orientation for my leadership training program. Woo hoo times two!
  
  
• It took me three tries to pass the Emergency Procedures and Infection Control test that followed the pre-orientation online training module I took this weekend. I am quite certain that I will never need to know that Security personnel, and not the fire department, are responsible for fire-watch when the sprinkler systems go offline in the university health-care buildings. But now you know too. Just in case.
  
  
• Speaking of sprinkler systems -- we're working with Joy on drinking from an open cup. She likes to put her hand into it to play with the water, and even when she's using it properly, she doesn't always pay enough attention to get the cup put back safely down. She did great the other day at snack with her barista, though, who commented afterward, "That was some impressive drinking -- and I mean that in a non-undergraduate sort of way!"
  
  
• With fall-like weather and school coming on, I sorted clothes for the girls this weekend. Joy has grown into her sister's old 5Ts. There's a particularly cute dress I pulled out for her... checked the tag... yep, 5T, good deal... and then I saw the label name. SPEECHLESS GIRLS. Must have been made for her!
  
  
• Except that Rose wore the dress in her day. And on the speech front, my girls are like matter and anti-matter.
  
  
• Except that I had them on the same tire-swing last night. And it didn't cause a universe-ending, matter/anti-matter collision. I swung 'em high, totally whipped that swing in circles. The grins were immense.
  
  
• Both my ladies continue to be loving the Food Network Channel. Joy's favorite thing about it lately appears to be the logo-bubble image on the lower right of the screen. She keeps trying to pop it.
  
  
• Speaking of bubbles. Must... go... shower. See ya!