It Has Gotten Better

Back in September when I wrote about my terrible, horrible, no-good, very bad experience with Joy's first day of kindergarten, I mentioned another even-worse breakdown that I'd have to write about someday. That experience came back to me this week at swim lessons, so I think it's time to tell the story.

During Tuesday's lesson, I was avidly peering through the glass at the pool waiting-room, watching Joy interact with a new swim teacher. (The wonderful one she started with has left the school, gah! but Joy loves the water so much that she smiled for the new gal anyway.) All of a sudden, a daddy behind me started telling me and another mom how he was a victim in a bizarre robbery incident that got written up in the newspaper. I'm thinking, gosh this guy looks familiar. As he proudly told us how he hassled the cops because he didn't want to tell them his name, and resented that they hassled him back, the feeling of familiarity grew. And suddenly, it clicked. I'd met this guy four years ago at the Children's Museum.

It was about this time of the season in 2007, and I'd been taking Joy to a weekly toddler-music program at the museum. It wasn't an easy thing to do. Joy likes music, but she didn't participate the way the other kids did, and I had to hover carefully to make sure she didn't grab for the other kids' tambourines or whatever. It had only been a few short months since the diagnoses that put the autism and LNSS labels to Joy's situation, labels that still sat like a massive weight on my shoulders.

Suddenly Joy decided she was all-done, and headed for the door. There were two little girls in her way, and instead of going around them like I expected, she gave the first one a shove. The two went down like dominoes, with the second domina grazing her head on a table on the way to the floor. A little blood, a lot of wailing -- and as I started to apologize to the girls' father -- THIS GUY -- his face twisted with anger and he snarled/spat "Thanks a LOT!" He hustled his daughters furiously out of the room before I could say another word.

And I started to bawl. The ugly-cry. Hot, awful tears that would not stop. The sobs just got worse when people started being kind to me... an acquaintance who worked another children's museum program and told me that "this guy" had a museum-wide reputation for unpleasant interactions... another mom with a kiddo on the spectrum who had made great progress... yet another mom who pointed out that any kid might have dealt that shove. It was all so supportive, and yet I couldn't pull it together. Someone even went and tipped off "this guy," who tried to apologize to me on the way out. I was over-reacting so hard to his initial over-reaction, I could hardly acknowledge him. It's a wonder I didn't crash the car on the way home.

Four years later. Once again "this guy" and I have our kids in the same program -- but this time my girl has the support she needs and is having a ball, and I'm in a much better place too, the start of kindergarten notwithstanding. It's kind of amazing to look back over those years and see how far we've come, how much we've learned, how much we've done, how much Joy has grown and matured and progressed.

It has gotten better.

And, we may even be switching our swim lessons to another day so we can have yet a third teacher this term, who happens to be the same wonderful teacher who taught Joy's very first swim lessons in the summer of 2008. Which would have the nice little bonus that I wouldn't even have to hang out poolside with "this guy"!

Included: Gifts in Her Name, Words in Her Mouth

This Christmas Joy and Rose both brought gifts home from school for their parents. Rose's gift to JoyDad was especially fine -- a calendar with the following image:


"Hot peppers are red
Your guitar is blue
You are my dad
And I love you."
As far as gifts from Joy went, it felt like something of a new era. There was a little "I (heart) Mom" pillow for JoyMama, a calendar for JoyDad (what are they trying to tell him?), and a lovely pair of red beeswax candles for both of us that we've been lighting for a festive touch at meals.



It felt really sweet to get gifts from Joy. I was happy to see the inclusion aspect of it too -- this was something the rest of her classmates were doing, something the teacher had thoughtfully organized and parent volunteers had facilitated. I witnessed some of the other kids taking their turn to make candles and saw as how it was mostly grown-ups doing the work, though I think the kids were proud of "their" candles.

I do wonder to what extent Joy had any idea what was going on. She may or may not have been able to have any hand at all in the making of them.

I have some similar wonderings about another procedure that's a regular part of Joy's school day. It's the routine during circle-time at the beginning of the morning where the kids take turns standing up and sharing their news since last they met. Joy participates in this via a GoTalk 4, on which we can record spoken messages that play back when she pushes a picture-button. The standard picture for "news" is a star. (The other button you see on the image is how she says "yes please" or "no thank you" to hot-lunch for that day.)


As with the gifts, this is a routine with a very sweet feel to it. Every morning, I come up with something for her to share. Monday it was "My Grandma and Grandpa came to visit from Kansas." Tuesday we had "I sat on my new rocking chair." I always try to make it something relatively normal-sounding, that the other kids can relate to. After all, this is one of the few consistent times of the day they'll be in one another's company! Rose provides the voice, and does a fantastic job. Joy's teacher and I are both charmed at the way Joy "speaks" in her sister's voice.

The benefits of this are many. Joy gets to take part in a classroom routine. Rose gets to help her sister. Classmates get a little window into Joy's world.

And yet, we're putting words into Joy's mouth every day with this routine, words she did not choose. Words that she can't (yet) choose. Is this befitting the dignity of a six-year-old human being, who does after all have her own thoughts and feelings and opinions? Is it that much different than if one used the GoTalk to make your favorite dolly "talk" by hand-over-hand causing dolly to push that button?

I'm not entirely sure. At this point, I feel we can justify it from a "fake it till you make it" perspective -- one day Joy will learn to share her own news, while dolly never would! -- in addition to all the other positives I pointed out.

As with everything we do in service of inclusion, we'll have to keep re-evaluating as we go.

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!"

Bullet Proof

We're definitely in new territory here, with Joy's ongoing rocky kindergarten transition.

Joy is still bringing the unhappy to school (not all-day every-day by any means, but plenty), and the incidents in which she's doing so with her teeth are starting to pile up.

I'm impressed at how her staff are able to greet her (and me) with a smile, after some of the bite encounters they've been having...

Fortunately the problem-solving is in full swing, with a district consultant who comes highly recommended. Most of the initial thoughts so far are behavioral, which is surely along the right track. But one of the expert insights on the physical side that hadn't even occurred to me was this:

Kevlar sleeves for Joy's staff!

I'd no idea this product existed, but I guess it makes sense. The market is primarily for industrial safety. Or, as a reviewer on Amazon said, it's great for getting into the rose bushes and berry canes. Might have to get a pair for myself to do double-duty with gardening and safety -- I got a bite on my hand this morning that would have been mitigated with the sleeves. And maybe folks would just assume that I'm treating a bad case of carpal tunnel or something.

Unfortunately, this doesn't address another prime biting target, as my own experience can attest. Next item we need in Kevlar is something like this:


Sigh.

Behavior as Communication

Given the way that September 1st and Labor Day hit this year, the first week of school had only three days; the second week had only 4; and it wasn't till this past week that we really had a full-fledged 5-day school week.

I think Joy's starting to realize that school is for real, not just a temporary state of affairs. She's not entirely thrilled about the new normal, and she's showing it in less-than-ideal ways any time she has to do something she doesn't want to do. Like, for example, get dropped off for the day to begin. The other day she was fine until I parked the car at the school. Then she tried to chomp me when I unbuckled her carseat. When her special ed teacher greeted her at the door, and said "hi," Joy responded with an angry "bye-bye!" Then she made no less than four swat/bite attempts on the way down the hallway to the locker.

Joy's schedule during the day is heavily modified, with one-on-one attention at all times. She's with the class for only a few times during the day -- part of the morning welcome routine, lunch, some recess, some afternoon free-time. In general, though, the classroom and its occupants are pretty much overwhelming for her. She even eats morning snack separately, for now at least. Otherwise she bolts her food so fast that she finishes long before anyone else, and then gets upset that the other students still have food but she doesn't.

Joy's unwelcome behaviors (biting, swatting, hair pull, etc.) are mostly happening in pretty clear communicative contexts: she's being asked to do something she doesn't want to do. Like, enter the danged school building in the first place. Alas, it's not just a matter of teaching her more appropriate ways to communicate her displeasure (tell us "all-done" instead of biting, for example). Unfortunately, whether she bites or (in our dreams) politely says, "No thank you," we can't honor the communication/request. She's still got to enter that building, go to her locker, etc. So there's not really any percentage in it for her to switch communication, because she's still not going to get what she wants. Sigh.

At least she got to get out and have fun for a while yesterday at the annual church campout. As has been the case the past two years, we had an almost-didn't-go scenario. This year, the weather was the wild card. Saturday morning JoyDad and I awoke at 4am to this stuff pounding down:


Can't believe that Joy & Rose slept through it, though they both woke with the thunder half an hour later and I'm not sure either of them got any further sleep.

Though the forecast for Saturday was threatening, the rain held off well enough that Rose & I went out to join the campout gathering after lunch, where she ran around on the trails with her friends, and I got to toss a frisbee around with some of our congregation's Ultimate Frisbee players. JoyDad brought Joy out for the potluck supper part of the event, and she happily ran up and down the path to the group campsite, stopping to play with stones and acorns.

We didn't stay for the singing around the campfire this year to see if Elvis would make an appearance -- too wiped out from the previous night's poor sleep. Those who did stay got their tents rained on overnight, so I think we made the right call. We'll hope to be able to stay over at next year's event, depending on what's going on with Joy (and with us) a year from now. I wonder what she'll have to tell us by then, either directly or indirectly.

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."

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!

Bringing Kindergarten Expectations Down to Earth

With the barest little bit of hindsight, I see that I could have framed my expectations differently, going into the first day of kindergarten.

I could have thought: well, Joy has been having some pretty rough therapy sessions lately, especially in the mornings -- and these are with familiar people, in familiar territory. How about we make that the bar for first-week expectations. If it's better than those sessions, we'll be doing fine. Just get her acquainted with the new staff, probably mostly in pull-out situations because the classroom is also new and the number of classmates will likely be overwhelming. If she gets through the days without us being called in for a rescue, that'll be a victory.

If I had gone in with that mindset? Today was a victory. Joy was dry-eyed and in reasonably good spirits when I picked her up, and has been pretty happy this evening too. She was dressed in the same clothes she went in with, and had no bruises on her forehead (though she did have some teeth-bruises on her knees, some of which I saw her make.)

I did not go in with that mindset.

This was the first day of kindergarten, after all! My last baby's first day, and we'd prepared soooo much.

• Delaying kindergarten a year.
  
• Kindergarten practice this past winter and spring.
  
• Visits this month from Joy's new staffers both at home and at daycare.
  
• Taking Joy to the school to meet her new classroom-teacher and spend time in the classroom, and again with her early-ed teacher from last year, just to get into the halls once more.
  
• Creating an extra document on top of the IEP, sort of an update to the present-level but all full of tips and tricks on what goes into Joy's day -- and then meeting with pretty much her whole team on Monday for over an hour to go over it.
  
• Sending extra goodies -- nap tent, a bag full of stimmies, special bag lunch of favorite treats

I figured that we'd get there early enough to try & park fairly close to the school, greet the staffers, get Joy's backpack sitting at the right place by the school building, take some photos, swing on the tire swing, say hi to friends and their families. Then between me & and an aide, we could help Joy file into the building with her classmates, put her stuff in her locker, and accompany her through the first couple of minutes of class time. Then I'd give her a kiss and go unwind at the parents' coffee break in the library, then head off to work -- while Joy would begin life in her new classroom, heavily supported but included as the class community-building process began.

I'd set the bar way too high.

We had parking problems. The playground was noisy and overwhelming, and Joy got upset. Began to build a reputation right away for kicking other kids. The classes got lined up late, and we escaped into the building ahead of them with her special ed teacher. But we couldn't stay in the classroom, because the morning snacks were all laid out on plates with a nametag for each kid's place. The teacher and I had talked about whether this would be a problem, I over-optimistically had said to go ahead and try his usual way, and he'd kindly set out the animal crackers we'd contributed so Joy would be sure to like the first day's snack. She liked it all right -- wanted to eat immediately. Ramped up the upset when she couldn't. We had to exit the classroom and go to the special ed teacher's office/playspace to start the day.

As we were trying to get Joy calmed down, she whacked me in the nose. And I started bawling. Could not stop. Haven't been in this bad a shape since one wretched incident not long after she was diagnosed (will have to tell you all about that one sometime). Just as I'd start to get a handle on myself, I'd hear the other kids in the class singing happily together, or Joy would pull a self-injury attempt, and I'd start up again.

I probably should have left sooner than I did, but I was there long enough that Joy actually did get calmed down and was sharing some nice moments with the spec. ed teacher. I guess I still hadn't ditched the expectations, because I then ventured to say that it might be nice if Joy could at least share snack with the class. So we went out to check things out.

Alas, they were not yet ready to eat snack. And the classroom teacher -- not having seen Joy come in -- had marked her absent and had to go change the designation. And we couldn't deny Joy the snack at that point, so she inhaled her crackers, demanded more (because since nobody else was eating, there were the rest of those full plates), and got all wound up again when she couldn't have more. Back to the pull-out room she went. And I lit out of the building with a swollen face and the ugly-cry just welling up all over, and called in sick to work.

That's our victory, there. If I'd gone in with the right set of expectations and all.

There Was A Little Girl

The other night, JoyDad and I got to spend some quality time with Joy. Rose was off with friends for the whole evening, and Joy was delightfully happy, and playful, and interactive. At one point JoyDad sighed and turned to me and said, "When she's being sweet, she's just so sweet!"

Which was funny, because I'd already been plotting a post around a rhyme I'd remembered from my childhood:

There was a little girl,
Who had a little curl,
Right in the middle of her forehead.
When she was good,
She was very good indeed,
But when she was bad she was horrid.
-- Henry Wadsworth Longfellow

Masterful use of slant-rhyme (forehead/horrid) -- I guess it makes sense that it comes from a master, though I hadn't known it was Longfellow's work until I went looking it up for this post!

Not that the concept of being good doesn't set my teeth on edge. Sweet behavior and core "goodness" are very different things, and we conflate them at our peril. It's even worse to assign good and horrid intention to a child whose behavior is surely coming from causes we don't fully understand...

I gotta say, though, Longfellow's little ditty captures something of the contrasts we've been living with Joy lately.

When we're having our good moments, she lets us record her singing, and then sings along again and again as we play it back! She smiles, she giggles, she initiates interactions, she's truly a joy to be with.

The bad moments lately, as I mentioned in my transition post, are rather scary things to have happening as we head toward kindergarten: head-banging, and hitting and hair-pulling.

Take Saturday, for example. Saturday afternoon Joy got up happy from her rest, and we went to a gallery opening. (Elites that we are.) Actually, it was a home-grown art show, engineered by an enterprising mama who'd been doing a home-based art camp for her daughters and then displayed the results on the walls of their home and made an event of it. The girls are in the same grades as Rose & Joy; the older one is on Rose's soccer team, and the younger will be in Joy's kindergarten class. So far, Joy is the only classmate that younger-daughter knows, and the family has been capitalizing on the fact that there'll be at least one familiar face!

Joy was willing to let me lead her around as her classmate-to-be proudly showed off work. Then we found some Joy-appropriate toys in the play room where she happily settled, despite rather a crunch of other kids romping and making noise. She loved the snacks: crackers! blueberries! grape tomatoes! We ended up staying for almost two hours, with nary an outburst or protest in sight. (OK, she did make one break out of the yard to try & play with a sprinkler on the other side of the cul-de-sac. But other than that.)

This was a different girl entirely from the one her morning autism-therapist encountered. Joy gave him one of the roughest sessions she's ever thrown at him -- he's usually a favorite for her. He could hardly make the slightest request of her without getting an over-the-top frustration reaction. Several of these involved Joy getting down on her hands and knees and trying to pile-driver her head into the floor.

The head-banging. Oh my, the head-banging.

We have a whole bag of calming tricks, which we shared at a meeting with her school team yesterday. These include:

• singing
  
• soft calm talking
  
• slip a pillow or thick quilt under her head
  
• change of activity / distraction
  
• silly/fun people games
  
• glider rocker
  
• Baby Einstein MP3s/CD
  
• change of venue
  
• sit in highchair
  
• chewies
  
• pillow squishes
  
• bouncing on therapy ball
  
• back off / alone time
  
• pressure to the head / body-sock on the head

We've been trying very hard to take a thoughtful approach to this, trying not to panic, working to figure out the behavior and keep things from escalating, praying that the switches will slide sooner rather than later. From a behavioral perspective, the headbanging does seem to be a frustration reaction, even though sometimes it doesn't take much to set it off. ("Okay, Joy, let's go potty now"... BANG.) We also suspect there's a big sensory component. Some pressure -- quite a bit of head pressure -- feels good. We'd like to get her to choose other forms of expressing frustration, such as pressing her own hands to her head, or stomping her feet.

Of course the question of a helmet has come up in our thoughts. How could it not? There's almost an easy-fix feel to the idea of wearing a helmet... at least keep the wearer physically safe, then we can figure out what to do about the behavior itself!

Alas, this is one of those truly not-simple things. My thinking on the helmet-question has been profoundly influenced by Kristina Chew, who has written a lot about her son Charlie and self-injurious behaviors. Their experience with head-banging in the past couple of years has taken them through full-time helmet wearing at one school, to a much better experience and very-occasional helmet wearing at his current school.

I'm going to quote a particularly relevant paragraph here, from a post of hers that's well worth reading in its entirety:

One thing I have learned from all this is that often the most obvious solutions just treat the problem people see, without addressing the deeper causes. Thus did the school district (and their lawyers) insist that Charlie wear a helmet. But that blue plastic apparatus has been the equivalent of a putting a band-aid on something serious that requires much more examination. The "protection" offered by the helmet was limited at best. As Jim and I predicted, Charlie banged his head harder while wearing the helmet (which makes for really big holes in the walls). He probably started banging more while wearing the helmet (in part due to the discomfort of the thing?)

Joy hates having things on her head. Won't wear hats, won't wear headphones, no earmuffs, no sunglasses. We're lucky that she is willing to accept a hood on her parka, because winters can be brutal around here.

Imagine the frustration level that could be caused/escalated by forcing Joy to wear an apparatus on her head -- when she's frustrated!

No easy answers. Fortunately the good times far outweigh the horrid, even if we spend a disproportionate time agonizing about the rough stuff.

Onward to kindergarten. Our little girl has her first day tomorrow, at a public school with a fine reputation. We like what we know of her team so far. Ready or not, here she comes. Keep thinking those good thoughts for us!

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.