Further Adventures Up North

What better way to celebrate a long holiday weekend than to head up north with family?

It had only been a month since our last trip, so all of us knew the drill. Pretty well, anyway. We'd thought ahead for some helpful additions such as water shoes to protect our feet from the lake bottom; it would have been nice if I'd remembered my swimsuit, though! (T-shirt and shorts made an acceptable substitute.)

We had a somewhat larger group this time, with both JoyDad's brothers (Uncle Marathon and Uncle DO) and their spouses (Auntie Save-the-Tatas and Auntie LO). Joy was delighted to discover that four out of the six adults could do JoyDad's special trick where he relaxes his face and shakes his head quickly from side to side, making a silly "blub-blub-blub" noise with his mouth. She ran from one to the other on the screen porch, grinning up at them and shaking her head to request more!

Joy also had a special connection with Auntie Save-the-Tatas, whom she doesn't see often. This auntie was the go-to gal for special kissies and cuddles. Cute as could be.

Auntie LO and Uncle DO, meanwhile, brought the entertainment with games and goodies. Rose loved the big bubble-wands they brought, just perfect for holding up in the wind on the pier and creating huge bubbles for Joy's delight:


Joy, meanwhile, got a lot of mileage out of the swim-noodles that we bought on the way:


Wonderful weekend for water-play! The weather was warm and we had sunny skies for most of the sojourn. Despite the wind on the water, Uncle Marathon could always find a place to anchor the pontoon boat for the whole crew to take the plunge. Joy discovered what fun it was to lean back in the water in her life-vest and kick with her feet. And Rose was brave enough this time to actually jump from the boat:


The lake was at least a foot higher than it was a month ago, due to some rain and a strategically placed beaver dam. This made for some fine water-play down at the pier as well:



I suppose I should report that we finally broke our flawless chain of laxa-swim events. After a less-than-ideal diaper change on the pontoon boat the first time out, we managed to have the rest of the weekend's swims without going through more than one swim diaper. Whew. And in further toileting news, we did bring along the potty insert so that Joy could practice in the outhouse. I didn't have the stamina to take her for nearly as many scheduled trips as we do at home, but we practiced often enough that she did pee out there once!

Though it seems sometimes that the lake vacations never change, this time there was a new addition, engineered by the inlaws who own the larger share of the property and spend most of the summer up there: a new, not-quite-finished shower house.



It's quite a complex system. First you have to pump a tank full of water by hand over by the old pump. Then you have to fire up the generator so the sump pump can move the water over to the tank by the shower. Then there's switch mechanisms in the shower for heat and water pressure. Fancy stuff.

Of course, it wouldn't be a lake vacation without some explosive crisis. For some reason the girls and I are always down at the lake when the hollering starts. We were splashing at the pier when Uncle Marathon's voice raised the alarm, and his brothers burst out of the cabin (one out the front door, one out the back) to come to his assistance.

Here's what exploded this time:


Doesn't it look rather like an exotic flower? Alas, this is the remains of the hot water line coming into the shower house. The tubing was obviously not quite of a caliber to take the heat and the pressure, and so Uncle Marathon got an unfortunate surprise during his shower experience! (Auntie LO was the only one who got an uninterrupted shower earlier that afternoon. Lucky lady.)

Though we were there for Independence Day, we didn't take any explosives up with us. There's been a drought up there, and we weren't interested in risking a forest fire -- though it turned out to be rainy on Sunday afternoon into the evening, so even our grilling was soggy! The gray sky was still light when we put the girls to bed, and then we retired back to the screen porch to listen to the 1812 Overture that Uncle DO and Aunt LO had thoughtfully put on their MP3 player. Just as the cannons were firing, we noticed that the sky behind the cabin was producing shades of pink. As we ventured out to see, we discovered that the sunset had produced something else amazing:


This rainbow was huge, and complete. No way to get it all on the camera. It arced all the way across the sky, and from the end of the pier we could see the entire arc reflected in the lake as well. Full circle.

Northwoods Adventures

As the holiday weekend approached and we watched the weather forecast for our northwoods getaway, we feared an adventure full of sweltering heat and vicious bugs. Several years ago JoyDad and Rose had suffered through such a Memorial Day sweatbox at the lake, barely able to step out of the overheated cabins without being carried off by mosquitoes and biting flies. (Other years, we've had snow at the end of May. You just never know.)

This year couldn't have been more beautiful. The sun shone hot at mid-day, but the air was dry and didn't hold the heat at night. In fact, everything was dry. The lake was low. But the drought meant that the bugs were at an all-time minimum for spring. It felt like mid-summer.

The dry roads meant we could go driving on paths that are usually too muddy or flooded -- and as we were out driving, we saw a black bear! He lumbered along ahead of us for quite a ways along the road before crashing his way into the forest. Fortunately we were several miles from the cabins at that point. Right next to the cabins all we saw were hummingbirds, eagles, woodpeckers, loons, ducks, and a little red squirrel!

Oh, and the two little crawdads I caught by hand as we cavorted in the shallows right off the pier. And the leech I brushed off my foot. Rose was wary of the muck and rocks in the lake, but Joy could have played all day. She splashed and splashed...


... and climbed the pier and jumped back in, over and over.


She also figured out how to "swim" by walking on her hands in the shallow water, pulling her body along behind.

All that exercise could work up quite a thirst. One meal Joy was sitting next to me and reached over toward my share with a big "more"! The most likely desirables were the beverages -- a tumbler of milk and a bottle of beer. I poured her a little glass of milk, but she's been on an anti-milk kick lately and pushed it away after one sip. The comment came from across the table -- "Hey, maybe she wants your beer!" And from Joy, the explosive echo: "BEE!"

One of the great pleasures of the lake vacation is the photography. Rose now uses the old digital camera we got back when she was six months old:


She's learning to identify wildflowers as well as capture them in pixels. Here's a pink ladyslipper:


And I found and photographed a nodding trillium:


Ah, but I haven't yet shared the biggest adventure of all. Splashing by the shore was fun, but the real action involved the pontoon boat (thank you Uncle Marathon, and Uncle DO who couldn't be there this time!)


Take the boat out on the lake, anchor in about 20 feet of water, tighten up the girls' life-vests, and throw 'em overboard! OK, not really. We threatened to do it to Rose, but she shrieked and insisted on climbing gently down the ladder. Joy wouldn't have minded -- any way into the water was fine. Uncle Marathon was eager to take the plunge as well...



One one such swimming excursion, we were anchored a ways out in front of the cabin, about half-way between the pier and the eagle's nest. GrampaK had stayed behind at the cabin to take it easy. We were glad that he was in good enough health to come to the lake in the first place, but swimming wasn't part of that package. So the rest of us were out with the boat, just getting started, when suddenly GrampaK's voice came rolling out over the water, calling Uncle Marathon by name. And then these words, urgent and chilling:

Come. Home. Come home now!

And then silence.

[to be continued]

Confessions of an Ugly Stepsister

One additional delight that came of my visit to AuntLO and UncleDO earlier this month was that they were culling their book collection, and invited me to carry off any of the discards that I wanted. Among the novels I took from the pile was Confessions of an Ugly Stepsister, by Gregory Maguire. I had read his Wicked and felt rather take-it-or-leave-it (I haven't seen the musical, how culturally out-of-touch I am sometimes!), but was willing to give him another chance.

Confessions of an Ugly Stepsister was ever-so-much-more compelling!

First off, I was a sucker for Tracy Chevalier's Girl With a Pearl Earring when I read it a couple years ago, set in the city and household of the painter Vermeer in 17th-century Holland. Confessions places its retelling of the Cinderella story in that milieu and time-frame (well, not Vermeer's house, but definitely the Holland of Vermeer and Rembrandt), such that the household details felt familiar. So too did the exploration of women as artistic subjects, and as apprentice artists themselves.

Maguire goes in deep on the themes of ugliness and beauty and art; on perception and reality and the places where perception fails. His retelling of the Cinderella story is full of surprises and yet makes perfect sense as to how HIS version might have been twisted into the fairy tale we know today (as if he weren't the one doing the twisting!)

So why does this rate an Elvis Sighting?

Well, it's the older (ugly) stepsister Ruth. Most of the book is told from the perspective of the younger (ugly) stepsister Iris, who is clever and thoughtful but pinched and plain in physical appearance. The older stepsister, when first described, is "a solid thing, already more than adult size, but simple. A pendulum of spit swings out and makes a tassel. Iris reaches and wipes Ruth's mouth."

Ruth doesn't talk. Ruth perseverates on a little toy given her by the ethereally-lovely girl who will one day be her (beautiful) stepsister. "Is she a changeling?" the exquisite Clara/Cinderella asks.

The word "autism" would have been a complete anachronism to 17th-century Holland, and Maguire doesn't make any such diagnosis. But I heard spectrum echoes. (Is that perception on my part, or a place where perception fails?)

Ruth is essential to the plot.

And I must confess...

that I can't say any more, because I simply cannot spoiler this book. GAH!

Library Conference

I'm back again -- didja miss me?

I didn't mean to take quite this long to post, but between last weekend's conferencing, the regular daily plate-spinning, and the bounty of the plantation (have frozen umpteen quarts of green-beans, and canned 10 quarts of applesauce and a double-recipe of cherry jam since last we spoke), my poor blog has gone sliding down the priorities.

However. The library conference needs reporting!

Though the pickings were a little slim for my data-library specialty, I did manage to find relevant vendors in the exhibit hall and useful sessions to attend. I also, wonder of wonders, connected up with EVERY ONE of the people-meetings I'd arranged. It really felt in some ways like another reunion weekend, except instead of college friends, it was high school buddies, a housemate from my post-college years in Mennonite Voluntary Service, a college-library colleague whom I hadn't seen since JoyDad & I made our last cross-country move 11 years ago, a data-librarian colleague from social-science data conferences. (Yes, they have those. Who knew?) And then the wonderful hospitality of UncleDO & AuntLO, who treated me to a grilled-out dinner on their rooftop deck Saturday night, with a spectacular sunset and view of the twinkling city skyline as the darkness fell. Ahhh.

The very last session I attended at the conference was something just for me. It was a session called "Serving Students Along the Autism Spectrum." The program was aimed particularly at school libraries, but it sounded to me as if the attendees represented a broad range of libraries -- and also that some of the more coordinated efforts are happening in the public libraries! Which makes sense, because school libraries are often deemed expendable in budget-cutting times, and we're surely in budget-slashing times these days... many school librarians are just trying to keep their heads above water. But I digress. At any rate, the number of attendees caught the presenters off guard, to the point that they ran out of handout packets!

The session itself had a "what is autism" training component to it, but also had a school librarian describing her own work with students on the spectrum, and representatives from the Chicago Public Library talking about their recent system-wide efforts to orient staff and acquire/create autism-related materials. The CPL is a big system, and I was impressed at how broad their staff-awareness efforts sounded, though at this point it would be hard to guess it from their web site. They also spoke of "inclusion kits" that they're making available for check-out, though it's not yet a completed work -- the kits are social-story materials aimed at particular situations like using the library or using the CTA public transit system.

The school librarian who spoke was interesting. She had a speaking style that was simultaneously animated, with big gestures, but slowly spoken and with huge emphasis on what felt like almost every point, practically every other word. I actually found it annoying to listen to, but then thought "hey, she's showing us what she thinks works when she communicates with young'uns on the spectrum in her library!" Which put a different cast on it. Kind of like how Barney is totally annoying for adults, but little ones lap it up...

A few random good points:

• On the school library side of things, there was a good point made about keeping the library in mind when it comes to IEPs (filing away for future).
  
• On libraries in general, one of the presenters spoke about how libraries can be a natural match for people with autism. It's generally a quiet place; it's generally predictable, with rules for how things go; there are usually safe-feeling nooks and crannies; and there are BOOKS! There are COMPUTERS! You can learn as much as you like about your all-consuming interest!
  
• An audience member asked for recommendations for story-time books for kids on the spectrum. The responder gave some examples of books with rhythmic cadences and rhymes, repeated patterns, interesting pictures -- and the audience member pointed out that those are all things that make good read-alouds for any kid. YESSS!

The presenters pointed out an award-winning set of resources for libraries, put together by Scotch Plains Public Library and Fanwood Memorial Library, both of New Jersey (where the oft-quoted autism prevalence number is 1 in 94.) The program is called Libraries and Autism: We're Connected, and consists of a 20-minute training video for library staff, a PowerPoint training presentation, recommendations for autism-related materials for library collections, a printed tool with Boardmaker-type icons for library-users with autism to communicate with staff, a social-story tool called This is my Library, links and logos. The panel wanted to rope these people into the conference session, but discovered that they'd be receiving an award at the conference during the same time slot!

I was impressed with the video. (It looks like two parts, but Part 1 is actually the complete presentation, 20 minutes long. Part 2 repeats the last 10 minutes of Part 1 - strange. I figured it out! Part 1 & Part 2 are ten-minute YouTube segments, OR you can click on the video player and play the whole 20-minute video from the library server.) It was very reassuring, low-key, professional. Participants in the video were clearly on the spectrum themselves, not just actors (2 kids, one adult).

Several nice points in the training video:

• They use the quote "If you've met one person with autism, you've met one person with autism." Nice!
  
• They recommend people-first language (person with autism). I know that's got its own level of controversy, but it fit well into the people-first emphasis of the video overall (e.g. The tips in this video are really quite universal... any encounter with ANY library user should involve a receptive smile and personal words of welcome...)
  
• One particularly useful conversation tip for de-escalating uncomfortable situations involved asking common social questions to help library users with autism to get on-script and decrease anxiety levels
  
• Good point that if there's a caregiver present, that caregiver is not automatically an intermediary -- library staff should communicate as directly with the person as possible
  
• Library staff can be ambassadors to the community, by how they respond to situations involving autism! If the staff is low-key and accepting about flapping or vocal stims, for example, it sends an important message to other people nearby that this is not cause for alarm.
  
• The video pointed out the people on the spectrum can make excellent library employees and volunteers. (Oh yeah!)

And there was more. As I said, I was quite impressed. I'd be interested to hear reviews from a spectrum perspective, to fill in what I might be missing.

One quibble I have with the materials is some discomfort with the logo. There's that darn puzzle-piece thing again. It's not so bad when the puzzle-pieces are connected to the books in the image -- when the libraries are part of the puzzle of life, and we're all in it together trying to figure out how to do things right, that's positive. But they use the puzzle-piece part of the logo separately too, and the whole implication that people on the spectrum themselves are puzzles to figure out... bleah.

The recommended links on the site also rather bend over backward to be fair-and-balanced about vaccines. On the other hand, the blog recommendations are much more neurodiversity oriented: LeftBrain/RightBrain, Autism Hub, and more.

Well, it's taken me long enough to get this together, I'll just post now. Am hoping to get back to my more regularly scheduled programming once the beans and cherries and apples start to slow down!

Random Tuesday Thoughts

JoyDad takes the wheel for a spin through a special Memorial Day Weekend edition of Random Tuesday Thoughts...

• We are blessed that Joy is a good traveler. I know some kids on the spectrum take exception to having their routines mangled by vacations and such, but Joy just seems to take it as it comes. She doesn't seem to mind the long car rides, strange places and stranger people (but hey, they are the only family I have...)


• A favorite activity for Joy this weekend was bubbles. Joy even tried popping them with her nose, which was too cute for words. And it is great to see her able to track individual bubbles with her eyes, and have repeated success in popping the bubble she is following.


• Another favorite activity for Joy was getting any available adult (and sometimes Rose) to help her to jump. And there were seven adults for her to choose from, so the opportunities were plentiful... She doesn't have a word for "jump," but she lets you know in no uncertain terms by coming up in front of you and grabbing both of your hands. She makes wonderful eye contact as she sails through the air, with a great big grin and squeals of delight.


• When she wasn't chasing bubbles or requesting the jump game, Joy also liked to play what we call the clap game. She'll put her hands on yours and make them clap. She does that a time or two, and then makes them miss with the other person saying a great, big "UH OH!"


• Rose loves going to the cabin. She didn't seemed fazed by the bugs, and spent a lot of time outside on the past-its-prime swingset and down by the pier. She is looking forward to telling her friends about it at school tomorrow. We printed out some pictures of key events (the restaurant meal in town the morning we arrived, the bald eagles nesting in a tree, the ride on her uncles' boat).



• The fish weren't biting but the bugs were. We took to describing the swarms of bugs as "biblical" in their epicness. And they must not have gotten the memo about how deet was supposed to repel them.


• Changing a tire on a large vehicle on soft sand is sub-optimal. The jack doesn't do a good job of staying put. But if you are going to drop said large vehicle onto its brake rotor, soft sand does less damage than pavement would. Don't ask us how we know...


• Have you ever tried changing a tire with about a gajillion gnats trying to suck every last drop of fluid from your body? Or chopping up a tree that has fallen on your garage while choking on a lungful of gnats? Let me tell you, you haven't lived until you've tried that. Bet you're jealous.


• Now that I think about it, I'd take using the outhouse when it's 20 below zero over the gnats any day, thankyouverymuch. Oh yes, I have used the outhouse at the cabin in the middle of the winter, with the outside temperature hovering around 20 below. Good times....


• Even with the bugs and lack of indoor plumbing, I'd still rather be there than here.


• JoyMama even managed to squeeze in a run on Sunday. She was smart and went early in the morning while there was still frost keeping the gnats at bay. Uncle Marathon and UncleDO wimped out. Although Uncle Marathon does get props for going swimming in the very cold lake.


• Hot and cold running water are not essential for humans to live. And it's nice to be reminded of what a luxury they are (especially the hot running water) by going without for a few days. I have partaken of the soap and hot running water since our return to civilization, so y'all can take the clothespins off your noses.


• Our cabin and lake in da U.P. are about the only things that have remained constant in my life. The lake still looks the same as it did when I was a wee lad, the cabin looks and smells just like it did way back then. I'm glad that JoyMama and the girls like to go up there, it holds a lot of memories for me, and hopefully there's a lot more left to be made...

Happy Anniversary UncleDO and AuntLO!

On October 20th, 2007, Joy & Rose officially gained a new auntie by marriage.

They also both got to be flower girls!

Now, there's always a bit of risk entailed in the flower girl thing, and the younger, the riskier. You never quite know how they're going to perform at the actual ceremony! Having a three-year-old in the mix along with her five-year-old sister makes things more than a little unpredictable.

When the three-year-old also has autism and epilepsy, all bets are off.

The happy couple didn't waver as the planning process went along. They were quite definite: they wanted both girls in their wedding, even though they of course knew about the autism and the epilepsy. No, they didn't mind if I walked down the aisle next to Joy to keep things on track. And whatever happened, they assured us, it would be cute and make a good story.

Perhaps you can tell already that AuntLO was the ultimate UN-Bridezilla. We had such fun together figuring out dresses for both girls to coordinate with her ivory & burgundy wedding color-scheme, while simultaneously trying not to break the bank.

It's a rare late-October day in Chicago that comes in with a clear blue sky and over 70 degrees, but that's what they got for their wedding day on October 20 last year:


We had a couple hours drive to get to the church, and Joy did have a pretty big seizure at one point along the way, but we were hopeful that she'd be feeling fairly well recovered by the time we got there and got her all dressed up. (The Oct. 2007 trip to Chicago was one point in our data gathering that, up until this October, travel seemed to trigger seizures.)

Then she had another sizable seizure just as we were walking up to the church. Arghhh! Despite her obvious unhappiness, we went ahead and got both girls dressed up in the church bathroom, and got their lovely little baskets of rose petals, and hoped for the best...

And then while the processional music was playing and we were waiting our turn to walk in, she had another one.

The poor kid. I tried to walk in with her anyway, thinking that maybe she'd be so stunned that she'd just start moving forward and keep going.

Rose flower-girled like a pro, walking slowly and regally and strewing rose-petals "just so" (she'd been reading the Kevin Henkes book Lilly's Big Day for good practice!)

Joy took three steps with me, a little in front of me. Then she flung her petal basket in one direction and went running in the other, between a couple of empty pews. All she wanted to do was escape.

I pursued my sweet baby, picked her up, cuddled her the rest of the way up to the front of the church, circled around and pretty much immediately carried her back down the other aisle out the back of the church -- to await the incipient misery and fuss that always follows soon after a big seizure.

The beautiful old Catholic church building in that old Chicago neighborhood did not, of course, have a cry room. That wasn't on anyone's radar back when the church was built (heck, the term "radar" wasn't even coined until the 1940s!)

Fortunately there was a lovely little fenced grassy yard and garden at the back of the church, and it was so warm we didn't even need a wrap. I followed Joy around, trying to keep her safe through the worst of her reaction until she was a little calmer, and then we snuck back in to grab my purse and brought Rose out as well -- turned out that the full-fledged wedding mass was getting too long for her. So I snapped some photos. Here's Joy:


There was a statue of St. Francis in the middle of the little lawn, about the same height as Joy and shorter than Rose!


I won't post any of the official photographer's shots, from after the ceremony. Not only are they all from the front, Joy doesn't do well with posed photos and wasn't in a particularly cooperative mood.

AuntLO and UncleDO, though, were over the moon. We were so delighted to share in their joy, and touched beyond belief at their insistence on including Joy in their celebration.

Afterwards we discovered in conversations with other guests that, if we didn't tell them about Joy's seizure, they just assumed that she was having a three-year-old moment there in the aisle at the ceremony. Just like any kid might do.

It was cute, and made a good story.

========

As part of "and they're living happily ever after," I'd like to mention that AuntLO and UncleDO came to visit us last month. We had a wonderful time, including a family walk by the lake and a restaurant dinner. Here's Rose feeding the ducks during our walk:


We're grateful beyond words for our amazing supportive family. Happy first anniversary, AuntLO and UncleDO. We love you guys!