Tuesday, August 31, 2010

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!

Sunday, August 29, 2010

Twinkle, Twinkle

A bedtime song...

Twinkle at MySpaceFileHosting.com

You'll have to click again on the "Twinkle" link on the new page that appears...

Goodnight, everyone!

Friday, August 27, 2010


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.)


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.

Saturday, August 21, 2010

Hope for the Next Generation

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

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

JoyMama: Islamophobic.

Rose: What does that mean?

JoyMama: It means being afraid of Muslims.

Rose: Why? They're just people!

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

Thursday, August 19, 2010

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.

Saturday, August 14, 2010

The Mosquito Days of Summer

I think we're in what might colloquially be called the "dog days" of summer. It's been an unusually warm week, with unusual humidity, an energy-sapping combination. And then to add injury to lethargy, along came swarms of mosquitoes. I'm surprised that the wretched level of mosquito-ness didn't arrive earlier in the summer, as wet as it's been around here. But we suddenly hit plague level about a week and a half ago, where even a solid soaking in repellent didn't keep the critters at bay for me.

When I go out to the garden to harvest (beans, cucumbers, tomatoes, peppers!) I put on lots of hot clothing -- jeans, long sleeves, a hat. In this weather! but that's the only thing that helps the Deet enough to keep me from being sucked dry.

Fortunately Joy isn't quite so susceptible, and doesn't get bit much if she's got on a good coat of Off. It's more important for her, though, because she doesn't have the self-control to keep herself from scratching the bites. So if she gets bit on the legs, that translates to open sores, and then she has to wear long pants to keep herself from further injury. In this weather!

One thing that's been very nice in this weather, and that's been swimming at the public pool. Last summer the weather just did not cooperate, plus it was a challenge to keep tabs on Rose while keeping a constant eye on Joy. We only made it to the pool a couple of times all summer. This time around, we've been to the pool three times since last report!

The most recent pool run was this evening, just me and the girls. A warm humid day, but the pool felt wonderful, and the mosquitoes apparently don't venture that far out over chlorine or something. Rose has gotten so self-sufficient, now that she's gotten so much better at swimming and is willing to do the slide on her own. This evening she ran into a friend from last year's after-school program, and they had a happy time together.

Meanwhile, Joy was building on her breath-holding skills. Last time I reported that she was voluntarily submerging and popping back up. This time she was going under for 2-3 seconds at a shot, and was propelling herself down to touch the red line on the bottom of the pool that marked the 3ft depth. Swimming! and experimenting! She also made some forays where she tried to sit down on the line rather than put a hand on it.

I still have to watch her like a hawk, because I want to be aware when she goes under. Also have to try to catch her if she's going to fill a swim-diaper...

No quarter yet, by the way. But the laxative is working -- got to look for that coin four times today. And I did find a pink sequin as a consolation prize.

Friday, August 13, 2010

Money Hungry

A week ago Thursday, Joy's day had an unusual little glitch.

It involved one of Joy's fine-motor practice tasks, putting coins into her mission-bank from church. The bank is a globe-shaped receptacle to help kids save their coins for denominational projects (we've helped dig wells in Haiti, and support an orphanage in Benin). For Joy to practice dropping the coins in the slot, an adult gets the small stash of quarters out from the base of the bank and gives them back to her to drop in.

In general, she's gotten very good at it. But a week ago Thursday, she tried a new innovation. With one of the quarters, instead of putting it in the bank, she put it into her mouth.

I bet you can guess where it went from there. Her babysitter said that the look on her face as it went down the hatch was priceless! She was so not expecting to consume that coin.

We've not been particularly worried, having seen no particular ill effects. We did call the doctor, and they pretty much told us to watch for the quarter's exit -- and we probably don't need to worry as long as we don't see any signs of discomfort, lack of appetite, coughing, etc. She's continued to eat well, and doesn't seem distressed.

I guess we maybe should've been addressing Joy's constipation issue before this happened? It makes it... how shall I say... challenging to determine whether she's successfully gotten this thing out of her system or not. We have not yet observed its passage, four... erm... movements later. It's possible that we missed it. I guess if it doesn't show up soon, we'll have to call the doc again.

Poor kid, coins and cherry bombs. I'm amazed that she still enjoys food at all.

Sunday, August 8, 2010

My Gal Is Red-Hot

Joy's been keeping us on our toes lately! One of the things that kind of ebbs and flows with her is how assertive she is with boundary-pushing and getting into things. Well, right now she's doing a lot of that pushing, using her strength and lightning speed to indulge in forbidden fun.

And the kitchen is full of forbidden fruit! Quite literally. Every now and again she'll make a break for it, tear into the kitchen and snag an apple. Or a peach. Or a big ol' tomato from the garden. Before we know it, she's sunk in her teeth and had a lovely chin-dripping bite.

She did that yesterday too... and got something a little bit more than she bargained for.

This pepper is red-hot
When Joy gets a red pepper on her plate, it's sweet and delicious.

This one from the garden was a "cherry hot" aka "cherry bomb." Even JoyDad approaches these with caution.

Oh, the look on her face as she realized that this wasn't the taste she'd expected!

The bite flew back out onto the floor. Her eyes watered. Her nose ran. Her lips got very rosy. My gal was red-hot.

I wonder what she was thinking. I wonder what lesson she took from it, if any.

I think JoyMama and JoyDad's lesson is: to put up the gate. And to put the hot stuff out of reach!

Sunday, August 1, 2010

All Wet

What a wonderful weekend for getting into the water!

On Saturday evening we took the whole family to the public pool. It's lovely to be able to go one-on-one with the girls as they get more adventuresome. Rose has been taking swimming lessons during summer day-camp, and can now tread water a little bit and do a splashy crawl for a few yards. She's also stretching out taller and taller, to the point where she can stand up easily in the water at the base of the lovely long waterslides. I've been trying to persuade her to go down the waterslide for the past couple of years -- but they won't let you wear your goggles, and they won't let you go down tandem, and these have always been her excuse. Finally on Saturday I convinced her to go down one slide while I went down the other. Guess what she did over and over again, all on her own, for the rest of the evening, and was terribly disappointed to quit when it was time to go?!

Joy, meanwhile, was making new discoveries too. She was experimenting with going underwater (all in the 2-3 foot zone of the pool, not to worry!) She was teaching herself to hold her breath, either popping right back up or submarining forward underwater for a bit. No coughing and choking at all. It was wonderful to see.

Since Rose was so busy with the waterslide, I didn't get any two-girls-jumping-in photos like we did last year. Joy didn't mind the lack of company, though. She jumped quite happily on her own. And the new twist this time was that she didn't always really need someone to catch her! She needed someone to jump towards, but there were several jumps where she went in and under and then stood up all on her own, without JoyDad having to touch her at all.

Joy Jumps
On Sunday we stayed in the back yard for our pool play, with a new larger inflatable pool and a big blue bucket. Joy loves the bucket in particular. This move I call "the ostrich":

Joy Ostrich
She was probably drinking the water. Oh did she drink the water, both at the public pool and at home. I don't know how she could hold that much -- her subsequent diapers certainly couldn't....

Rose invented a new game to distract her sister from consuming the water (perhaps we could call it a non-drinking game?) This one involved big buckets of dump and splash! I hasten to add that Joy doesn't mind being deluged. It makes hairwashing in the tub much easier than it otherwise would be.

Rose Splashes Joy
At least Rose has a sense of fair play and equal opportunity deluge:

Rose Splashes Herself
I can't believe that it's August already.

Appreciating Miracles

It was just this April when I posted about how Joy came busting out with the word "more" (mo!) at snacktime for JoyDad. What a miracle that was!

And how quickly we come to take things for granted.

Earlier this week I was talking on the phone with another mama in the autism community, whom -- what with one thing and another -- I haven't seen since the fall, though we've been in touch by phone. As it happened, I was serving Joy her snack while we were chatting. Joy finished the first small portion of animal crackers, and loudly requested "mo!" Per routine, I asked her "more what?" And she told me loud and clear, "CAH-cuh!"

My friend gasped. Then she said, "Oh, she has such a beautiful voice!" And then said, "I think I'm going to cry!"

Sometimes it takes a reminder to re-appreciate the miracles.