Meds and More

And I thought I had a lot of meds-information to absorb when it came to Abilify. Heh. Welcome to the JoyFamily infirmary.

I started feeling achy a week ago Thursday, and Joy began fighting a cold that week. We went downhill from there, and JoyDad eventually joined us on the slide. Monday Joy got diagnosed with an ear infection (and got a not-strong-enough antibiotic that we had to replace later); I got diagnosed with pneumonia. JoyDad joined us on antibiotics later in the week. Much doctor-appointment-ing, wearing of masks, chest-X-raying, etc.

Meds, meds, and more meds! Analgesics for the aches and fevers and chills; codeine-laced syrup for the cough; antibiotics for the infections; laxatives for constipation side effects; sleep aids for brain-racing side effects; more analgesics for headache side effects. Then there were the merely annoying side effects that didn't rise to the level of further medication: loss of appetite, bad taste in the mouth, mild nausea, a diuretic effect. (Not all effects were experienced by all JoyFamily sickos, by the way, as we had different med-cocktails.)

And we thought we were maybe going to be able to sort out the effects / non-effects / side-effects of Abilify? Again I say: Heh.

Fortunately we are all doing better, well enough to go out trick-or-treating tonight. We managed to buy and carve pumpkins yesterday, and I *so* wish I could post the photos! but I'm going to stick to my pseudonymous bloggy principles after all. Joy posed like a pro, hugged the jack-o-lanterns, leaned in next to Rose and gave a wonderful cheesy smile right into the camera. [E-mail me or drop a note in the comments, and I'll send a copy via e-mail. Unless you've never commented before or some such.]

Joy and I also got to go out adventuring on a nearby patch of short-grass prairie. The sun shone with that amazing slant-light you get in northern climes as days get short, and she had such fun zooming around on the paths and in the grass. It's one of those few places where she can run safely as much as she likes, and I don't have to be right on top of her. Plus there was nobody nearby for her to cough on. Just us and the hawk that frequents that area of town, way above our heads. As Rose would say, "Mama, that's FRIGHTFUL!" Because the hawk's name is, in fact, Frightful.

Anyway.

A Walk in the Park

Back before the summer started, as I was finishing up my LEND semester, I was looking forward to the more relaxed schedule. I'd have more time one-on-one with Joy again, with Rose at summer day-camp full time and my work schedule back down to half-time.

It didn't exactly work out that way. Just after my LEND graduation, I got offered a quarter-time summer gig through my LEND contacts, working on a guide to services and supports in Wisconsin for families of children with special health care needs. I couldn't pass up the opportunity, and it's been a fine experience so far. But it did eat right back up that extra time that was going to make this summer so much more relaxed.

Fortunately, it didn't eat up all the time. And with the summer weather being reasonably kind to us so far, Joy and I have been making some fun one-on-one excursions. To the local lake-front beach. To a kiddie splash-pad fountain setup at a local park. To our free local zoo. And yesterday, to the lovely conservation park right across from the elementary school that Joy will attend in oh-my-goodness-just-about-a-month.

We had perfect weather for our outing yesterday, sunny and warm with a light breeze. The prairie flowers are simply stunning this time of year.


Occasionally I had to encourage Joy to keep walking over the rocky sections of the path (rather than dropping to stim in the gravel and rub it onto her legs.) But mostly she kept going.


And once we got to paths of mown grass, it got even easier.


The long grass at the side of the path holds its own attractions, besides giving definition to the path to keep us from straying far.


There was a park bench under this oak tree that kept us circling back to this part of the path. We sat on it, stuffed grass strands through the slats, jumped down from it, used it as a changing table! (Didn't see another soul the entire hour we were out, other than one jogger just as we were returning to the parking lot.)



What a beautiful day.

Initiative and Planning.

Going to the park with Joy is a mixed bag these days. On the one hand, she's mighty stimmy on the gravel or woodchips or whatever. Handfuls go flying into the air at random times (one of those less-than-a-good-example kinds of things when other kids are around), or into the mouth. Bleah.

On the other hand, she is doing great things on the play structures. The other day I had her at the school playground, on equipment that had three different kinds of ladders (petal-grid, spiral, ordinary). It was such a treat to watch her think and plan as she made her way up the petal-grid and the spiral! The wheels were turning and she was making the most of it.

Then she saw the big-kid swings, way down the hill and across the grass.

WHOOSH. She was on her way.


When I caught up with her, she was trying to get into a swing. These are higher up than our usual park, though, and she couldn't quite make it. So she came over to me, grabbed my hands, put them under her arms. Pick me up, Mama. Put me in the swing. I was so happy to help!


Joy has done so well lately staying in the swing and holding on for high pushes, and not trying to get off until the swing is nearly stopped. So I gave her the big-kid treatment, with the great big running-underneath pushes (do you call those underducks? or underdogs?) Anyway. She grinned so big I thought her face was gonna split in two.

Meanwhile, Rose was clamoring for the big pushes too. I think they picked swings at the opposite end of the set on purpose to give Mama a workout...


Joy's use of the hand-pulling request has blossomed lately. To the buckles on her booster chair (unbuckle me, Mama, I want to get down!) To the TV/video-player (Baby Einstein, please, Mama!) To the door handle (play outside? Now?) To her own underarms (I'm tired of walking, pick me up!)

The flip side here is that when I have to refuse (sorry sweetie, we can't start a video, the therapist is coming in five minutes!) she is declaring her unhappiness in no uncertain terms. The fuss can persist long after the initial offense. I should be celebrating this, I guess, right? As in, it's not normal for a kid to give up so quickly and nonchalantly as she's generally done in the past. Oh bliss, oh Joy, she's discovered her inner two year old! Hurray, and a big deep sigh.

One final vignette for this post.

Yesterday afternoon Joy was hanging out in the living room, watching a video (yes, Baby Einstein, what else?) and I was lounging on the couch with a book. Suddenly she went over to the quilt that stays in the room, that her baristas use for blanket-pulls and swinging and such. Her 6-ft-7 barista-dude has been trying to teach her to help spread the quilt out a little bit -- he's the only one that can give her the full swinging treatment all by himself! Well, she took the quilt and made spreading motions and got it laid out a little bit on the floor. Then she came over, took my hand, pulled me from the couch. And then she sat down on that blanket.

Look Mama, I've done the planning & prep work. Swing me now!!

I called JoyDad over, and together we swung her high, to the accompaniment of that dazzling grin.

On the Edge (of 200 and otherwise)

First off, I mis-led you in my previous post. As I was looking through past posts in search of the top ten, I discovered a duplicate draft post that was being counted in my total. Once I deleted it, I was down to 198. This post is 199. Next one will be 200. So, we're still on the edge of 200. Ooops. The good news is, there's still time to nominate a favorite post for inclusion in the top ten!

Also on the edge (and I am obviously brazenly stealing this edge-concept) is what's up with me for this next year. I have the potential opportunity to take a fantastic one-year university program, as a parent of a child with special needs, that focuses on special-needs systems and family services, and entails intensive mentoring and leadership training and much additional coolness. It's designed to be about a 10-hour commitment per week. But first I have to get accepted, then I have to scrounge an extra day of childcare for Joy, then I have to re-arrange my life to accommodate this huge additional spinning plate (which right now looks like a huge serving-platter complete with Thanksgiving turkey). I'm thrilled, apprehensive, excited, busting at the seams with ideas -- wish me luck, y'all!

If that all weren't edgy enough, I've been thinking about Joy and physical edges lately. She has long been one to climb and teeter, generally scaring the wits out of whomever witnesses it. An early teetering favorite was the low windowsill in our living room (just barely visible in her somersaulting photo). One of her first occupational therapists suggested that the urge to get off-balance may be, for Joy, a way of feeling where she is in her skin, establishing where she is in space. Yikes!

These edges were much scarier when Joy was having daily seizures. You'd think we'd have been familiar faces at the local emergency room. That's not how it has worked out, though Joy's legs often have more bumps and bruises than we'd like to see. Amazingly enough, Joy seems to have developed rather a remarkable sense for how high is too high, how teetery is too teetery. Even though she scares us, her sense of the edge is actually pretty sound.

I've been seeing more and more evidence of this lately at parks this summer. She flings herself happily off of playground equipment ledges up to about 4 feet high, but avoids the edge when it's any higher. She has also been gaining confidence in climbing, not only going up standard ladders and ladder-grids, but also going up the kinds of climbers that look like string-art, with cables at odd angles, and climbing structures that are made of curves instead of straight edges. It's some pretty complex motor-planning that this girl has got going on.

Well, here we are at the edge of the school year, the edge of grade 2 for Rose, the edge of a new schedule for Joy, the edge of a new opportunity for me, the edge of 200 for the posts.

Geronimo-o-o-o-o-o!

Special Exposure Wednesday

Perspective at the Park



Just look at that swingset smile.

On a "big-kid" swing.

Joy!

Patterns at the Park

I had a fine evening at the park with Joy and Rose the other day. It had been a couple of weeks since the elements converged such that we could all go -- weather and absence of prior commitments on all sides. It was a different experience than the last trip!

Difference #1 - Rose rode her bike. Like, on the way there! When we went to the park to learn to ride, we loaded up the bike into the car and drove to the park. Now she can ride almost the whole way, and only has to walk her bike on one especially steep hill.

Difference #2 - Joy didn't dash. Last time we went, she wandered afield, and I had a big long run at one point, ending with a dramatic swoop whereby I caught her by the coat just as she was about to jump into the water in the ditch! This time, she spent the entire time in the gravel area.

Difference #3 - The gravel area didn't enter Joy's mouth. Last time, particularly near the end of our stay, I felt like I was digging gravel out of her mouth every time I turned around. This time? Not at all.

She did spend lots of time gravel-stimming, which felt very familiar. One new thing was shuffling her feet through the gravel on her way to the swings or play structure. I'm reminded of how last year she started the spring season being extremely stimmy at the park, not wanting to do anything else. Then over the course of the park season, she got gradually more interested in things other than the stimmies. Wondering if we're already seeing that pattern repeat.

Difference #4 - Joy wanted to play on both the big kid swings and the toddler swing. Last time she only wanted the toddler swing, though I tried to interest her in the big-kid swing, the kind with the flexible seat between two chains. She was having none of it, deliberately sliding off even before I could get her swinging. This time she gravitated toward the big-kid swing herself, got into position to hike herself up to sit on it, and then looked at me for help and signed "more" when she didn't quite make it! She went back to the swings several times, sometimes requesting "more" for my help, sometimes draping herself over the swing on her tummy and propelling herself. She even at one point tried to do the tummy-drape thing on the toddler swing, which didn't work quite so well. I liked seeing the experimenting, though. And the signing -- how glorious to see the signing.

Well, Rose would probably tell me (since they worked hard on defining patterns in kindergarten) that you can't call it a pattern until/unless it starts repeating. We shall see. Whatever else it was, though, it was a lovely evening at the park.

Special Exposure Wednesday: The Best Thing About the Park

The best thing about the park is the gravel!

A manicurist's salute to Osh for inspiring that last shot!