Sunday, November 30, 2008


Traveling with Joy & Rose has proven to be a whole lot easier lately, generally speaking.

When I started this blog back in July, we were just on the point of noticing a pattern -- that Joy's seizures got worse when we had long days of car travel. But then came this current string of seizure-free (81 days right now, touch/knock wood!) When we went to the northwoods in October, Joy travelled like a pro, and we had the same experience this holiday.

First leg of the trip took us to Thanksgiving Dinner at the home of AuntieS, where we contributed the pies:

Thanksgiving Pies
Next leg was to the home of my grandmother, Great-Grandma to Joy & Rose. At 99, she still hosts us overnight in her apartment and cooks for us and is so very interested to see the girls and hear about all the details of what's going on with us!

Joy was very comfortable at Great-Grandma's this visit. Everything about it was easier. For example, Great-Grandma noticed that Joy didn't cry AT ALL the entire visit. (No seizures means no seizure-fusses!) She initiated happy jumping-games with random adults, including an in-law relative whom she only met once before. She did almost no grabbing for forbidden stuff, and she did a lot of self-entertaining.

The last two points (grabbing & self-entertaining) combined into an interesting accident at one point during the visit!

Great-Grandma has a fun box of old, old toy building blocks. She has also tossed into that box a bunch of little clear plastic discs that come with the packaging for hearing-aid batteries. An example is on the left in the photo below:

Throwing Disks
Joy took a shine to the little plastic disks, especially once she discovered that they made a fun little clattery noise on the kitchen floor if she threw one down. She spent long stretches of time carrying little disks over to the kitchen and tossing, retrieving, tossing, retrieving.

Then during one of these games, when our guard was down, she looked up on the kitchen table and noticed a different kind of disk. Similar, yet larger and sparklier, like the disk on the right. It was a cut-glass coaster. And what a lovely crash and a shatter it made when she snagged it to use in her tossing game! As we galloped into the kitchen to remove her from the shards, she was trying to retrieve one of the larger pieces to make it happen again...

What a neat bit of generalization! So near, and yet so far. And she was so pleased with the results of the new toy, we had to work to keep her out of the kitchen after that point, as she obviously had it in her mind to reproduce all the fun that happened when she used the big sparkly tossing-disk.

Disk-shattering aside, though, in general it was a superb holiday!

Speaking of superb -- I got a most excellent blog-award last night, from Barbara at TherExtras. She has selected me for The Baddest Mommy-Blogger Award (remember, bad is the new good!)

Baddest Mommy Blogger Award
Here's what she had to say:
JoyMama is bad-to-the-bone. She was bad before she became a Mama - as evidenced by her willingness to EAT FIRE. And be photographed doing so. And post photos on her blog. After I asked for proof. Clearly, God prepared her for rare and wonderful parenting.

I'd be blushing, but when you're b-b-b-b-BAD to the bone, ain't nobody can make your face turn red.

Oh, and if you needed more proof that I'm a bad-mama rule-breaker -- as admitted previously, I generally don't really "do" tagging/awards. So I'm not passing it on, even though I know plenty of baaaad mommy bloggers. I'm sure the award will make its way around in due time!

Thursday, November 27, 2008

Happy Thanksgivi-versary!

Today is a two-fer of a special day.

Not only is it Thanksgiving (turkey and stuffing and pie, oh my!), it's also the 15th anniversary of the date that JoyDad and I tied the knot, way back in 1993.

Thanksgiving itself landed on November 25th that year. We held the rehearsal and dinner on Friday the 26th, then the wedding on Saturday the 27th, a wintry Chicago day with just a few snowflakes.

It's been quite the ride ever since!

Fifteen years, and so many blessings, too many to name. But we are particularly thankful for Joy, and Rose, and for one another.

Happy Thanksgiving, everyone, and especially to JoyDad, whom I love so VERY much!

Now it's off to bake those pies...

Tuesday, November 25, 2008

Look Away, Look Away

When I get Joy out of the crib in the morning, we have a little routine. I open the crib-tent zipper, open the blinds, greet her with a cheery good-morning. Then depending on how asleep or awake she is, I may pat her, help her untangle from the blankets, eventually help her to her feet.

Then we have a little hug, and I say the word "hug."

Then I repeat the word "up" several times, and give her a chance to request it (something she used to never miss, but it went away one day a couple months ago and hasn't come back yet).

Then I count "Ready, set..." and give her the chance to say either "up" or "go," another prompt she never used to miss.

Then I fill in the "go" for her, and lift her out of the crib with a kiss, and her pyjama-ed little feet go padding out toward the living room and/or breakfast table.

She does not look directly at me during this entire routine.

At least for this eye-contact avoidance thing, I have a frame of reference: John Elder Robison's book Look Me In The Eye, in which he describes how difficult (and perhaps over-rated?) eye-contact can be.

I don't have as good a framework for Joy's other frequent visual avoidance situation, where she declines to look at whatever task she's doing with her hands. I supposed I should say "whatever task she's being asked to do with her hands," because it's most noticeable when it's something an adult wants her to do: link pop-beads, put in a puzzle piece, buckle herself into her booster chair.

The booster chair is a fascinating example. She's very good at climbing into the chair herself, and retrieving the three straps that have to buckle together, and fitting the buckle together and pushing each side in with a pop! but with her fingers out of the way so as not to get pinched. Except she generally does it without looking, other than perhaps peripherally. When she accidentally gets one side of the buckle turned backward, it's well-nigh impossible for her to correct without seeing what's gone wrong.

How to help Joy look at what she's doing, enough to see it, learn it, achieve it?

Physically giving her head a gentle re-direct seems rather ham-handed and invasive, but it does at least get her to see that the buckle is turned backward or whatever, and correct it herself. Calling to her with voice-prompt, making a noise by tapping the item, waving the item in front of her face... none of them very effective.


Maybe she just wishes she were in Dixie -- Look away, look away!

Sunday, November 23, 2008

Elvis Says "No!"

Interesting language use this week with Joy.

We are still not really hearing words on a consistent basis, though there's been a fair amount of vocalizing. Our "Popeye Sighting" (when she used the word "ug-ug-ug" for "hug" a while back) has remained in the Elvis Sighting category -- I've only heard it once since. There are a few other words that come and go:

-- "gog-gog-gog" for doggie
-- "chuh" for chair (her mealtime booster-seat)
-- a few sounds from the farm See-n-Say, her current favorite toy
-- one blessed Elvis-Sighting string of "ma-ma-ma"

The most interesting recent Elvis Sighting to me, though, is her use of the word "no." She's been doing some deliberate "nuh-nuh-nuh" to mean no, but there have also been just a couple very clear, distinct, definitive "NO" utterances.

Here's the interesting bit -- unless I'm mistaken, they've all been said to just one of her 5 intensive-autism therapists (who reads this blog faithfully, so, hi!) Not to me, or her sister, or Lynda at daycare, or JoyDad, or her school district therapists. The context tends to be when this particular therapist asks Joy to give her something that she doesn't want to give. Joy has, on just a few occasions, pulled the item away and said no, clear as a bell.


She's also been responding better to "no" or "stop" from adults in a certain stimming situation she's been very persistent about. Which would be... umm, how to say this... oh well... humping. Pillows, stuffed animals, her blankets. She can get very... intense about it. Such a little sensory-seeker, our girl! It's not exactly that it's a problem, but it's the primary activity that keeps her awake when she oughtta be sleeping, and also pulls her into her own little world when she could be doing more useful, or interactive, or socially-acceptable things. So when she's not alone in her crib, we've been working on getting her to replace it with other activities.

It reminds us a little bit of another sensory activity that she was once very persistent with, which involved playing balance-beam with our low picture-window frame in the living room. There's just enough of a ledge, about a foot off the ground, for her to teeter on... and she went through a long phase of absolutely loving to teeter. Unfortunately she often teetered too far, and picked up lots of sad little bumps and bruises!

JoyDad's been the leader in these situations. I'm too much a softie, tending to think along the lines of "well, if that's the input she needs, I hate to get in the way." But JoyDad doesn't give up so easily. And, with repeated gentle admonitions (together with physical redirecting if need be), he eventually gets Joy to respond to a "No" or "Stop" voice-prompt. It eventually worked on the ledge-teetering issue -- I'm sure that he's the main reason the dimmer switch eventually slid to "off" and she stopped doing it altogether. With the "Joy loves her stuffed animals" situation, she is now willing to stop on voice-prompt. First she only accepted it from him, now she'll respond to the "no" from me (and I think from Lynda too) in that situation as well.

Yay, JoyDad!

Friday, November 21, 2008

A Single Goal

I should probably call this post "A Single Goal: or, More Cosmic Convergence."

Way back in August, Barbara wrote a post at TherExtras that criticized the hodgepodge that often results when too many experts are trying to accomplish too many things with a child:

What I don’t commonly see - or have not seen most of 30 years – are concentrated efforts to learn one skill at a time. I don’t hear or read families that do this. I’ve never seen an IEP that said “this school year Aloysius will be potty trained” or “Esperanza will learn to feed herself” – not at the preschool level, not at the kindergarten level, not at the elementary level.

How many high school students in special education do you estimate I’ve met who cannot do either toileting or feed themselves without assistance?

As I told Barbara at the time, Joy has a standard multi-faceted IEP, chock full of various goal areas for her therapists to address with her.

But even before the school year started, I had a conversation with Joy's school-district team leader. Unprompted, she told me that she had a thought for a single overarching goal for Joy this year, IEP complexity notwithstanding. That concept was: imitation.

Though it was a different angle than the single movement-oriented and task-oriented kind of goal that Barbara presented, there was power in that single simple-yet-not-so-simple idea of imitation. It has been a useful touchstone throughout the semester so far.

So then yesterday morning I once again had the chance to hang out with the incomparable Mama Mara. We got to talking about our respective blogs and I was musing on some of the posts I'd been meaning to do, and mentioned the single-goal thing. Her eyes lit up with cosmic-convergence connectedness, and she told me about her son's case manager at last week's parent teacher conference asking her the single-goal question: if you picked just one goal for your son this year, what would it be? I am terminally impressed that Mama Mara had an answer at the ready: that he would be able to get a handle on the "stuff" he needed to get through the day, keeping track of coat and backpack and such.

And thus do good ideas meet, shake hands, and ripple back out into the blogosphere...

Thursday, November 20, 2008

Evolving Definitions

So, what IS autism, anyway?

Not a rhetorical question, that.

I suppose that on some philosophical level, there is a knowable "something" that is the quintessence of that which we call "autism."

Problem is, we haven't managed to catch up to it yet, either from a causality standpoint or a definitional standpoint.

When I first began to learn about autism, I took a line of thought that I think I've since outgrown... I hung my hat on the clinical, psychiatric definition of autism that formed the basis for Joy's diagnosis. That definition comes from the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. The most recent edition, the 4th edition, came out in 1994, and is known as the DSM-IV. I referenced in a previous post the peculiar combination-platter approach that checks off certain criteria in certain groupings to constitute an autism diagnosis:
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

Uncle Schnirelmann obligingly contributed to the comments of that post a calculation of the number of potential combinations!

Here's the thing, though. This particular combination-platter that "is" autism has only been on the books since 1994. Autism was first added to the DSM in 1980; PDD-NOS (which broadens the autism spectrum considerably) was added in 1987; the autism definition expanded yet further in the current 1994 version, including the first mention of Asperger's.

Is autism in-and-of-itself really only the latest psychiatric definition? Did autism an sich (German for in-and-of-itself) actually change? Surely a reference book doesn't have quite that kind of power, right?

For anyone still hanging his or her hat on the clinical definition, hold on to the brim, because the world of psychiatrically-defined autism will be changing again, in not too many years.

The new DSM-V is due out in May 2012. The American Psychiatric Association started the wheels of the new edition turning as far back as 1999, in collaboration with the National Institute of Mental Health. There have been conferences and task forces, and starting in May 2008, 13 different work groups were convened to deal with different areas in the purview of the DSM. Autism is covered by the Neurodevelopmental Disorders Work Group, chaired by Susan Swedo, MD.

I didn't know all this off the top of my head, of course; got it from the American Psychiatric Association web site on the upcoming DSM-V. I started poking into this due to a blog post called Sausages and Legislation by afbh at Whose Planet Is It Anyway? The post references an LA Times piece from earlier this week, regarding a dispute between psychiatrists as to whether the process of assembling the DSM-V is going to be primarily a transparent process, or a closed-door process.

So that got me wondering, what exactly do we know about the status of the autism definition revision at this point? And that led me to this brief Report of the DSM-V Neurodevelopmental Disorders Work Group, dated November 2008.

The report lists three main areas of discussion for the work group:

1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.

2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

Then there are eight additional questions, and various subcommittees. I'm hoping this gets wider play in the autism blogs -- Kristina at Autism Vox has started that ball rolling. I'd like to see someone eventually take it in turn to invite discussions of each of the points and questions separately. (Not to worry. I won't inflict that on my particular readership!)

I will just comment a bit, though, on the one of the first three points that jumped out at me, and that's point #2, about the interface between autism and other genetic or biologically-definable conditions. The dual-diagnosis thing has been of particular interest to me, given Joy's combination of autism with linear nevus sebaceous syndrome. In our case, we've been conceptualizing Joy's autism as falling somehow under the LNSS umbrella. But I've also heard people referring to their quests to "rule out" autism by testing for genetic known-factors like Fragile X, and I've wondered why it couldn't be both -- especially since there's only one lone genetic exclusion in the DSM-IV, and that's Rett syndrome.

It's always seemed strange to me that Rett should be singled out, and at least mildly concerning that if the list of exclusions were to grow explicitly, it could have a massive impact on the eligibility for autism services of people who also have Down Syndrome, or Fragile X, or LNSS, or whatever. The work group report implies, though, that there's discussion about taking it in the other direction, maybe with explicit inclusions?

Fascinating stuff. I'm hoping that the official discussion stays as transparent as possible.

Wednesday, November 19, 2008

Deep Thoughts

Gentle geographical gradients are ever so much more noticeable when running than when walking.

They're even more noticeable when attempting to run while pushing a jogging stroller containing a sturdy four-year-old.

That is all.

Monday, November 17, 2008

Who Loves Joy?

Last night at Sunday School I got to fill in as Joy's volunteer aide for part of the session. She sat in my lap on the story-rug next to the three little pre-school guys (including her former day-care buddy) who are her classmates, while the teacher read Guess How Much I Love You, a board book by Sam McBratney in which Little Nut-Brown Hare and his father talk about how very much they love each other! Then we had a conversation about "who loves you?" The kids were finding it easier to think about "who do you love?" but the teacher managed to get some thoughts out of the guys about how their parents love them, and their siblings probably do too, etc.

Then it came Joy's turn and I gave her a great big hug in my lap, while asking the guys if they could think of who might possibly love Joy so very much.

They thought for a second and then Joy's former day-care buddy blurted out, "I love Joy!"

All together now: "Awwwwwww!"

And -- the lesson toward which we were working -- God loves her too. So very much.

All the way to the moon and back, in the words of the story.

And God loves her day-care buddy, and her classmates, and her mama, and her teacher...

And you, too.

Sunday, November 16, 2008


I recently finished reading an excellent book, Mountains Beyond Mountains by Tracy Kidder. It's a non-fiction account of a dedicated (and generous and brilliant and eccentric) physician, Paul Farmer, and his work among the poorest of the poor, first in Haiti and then beyond. His work in Haiti eventually blossomed into public-policy impact for how tuberculosis (TB) and AIDS are treated among the poor worldwide.

Kidder is a masterful storyteller, expert at bringing up details that reappear later in the book as he weaves his themes together. One such detail had to do with a Haitian woman whom Farmer treated for TB.

In the case of TB, a major challenge is that the treatment regimen must be followed faithfully for a long time, or the disease simply becomes resistant to that particular drug. Conventional wisdom for Haiti is that it's hard to get patients to buy into this necessity because they want to attribute disease to Voodoo curses instead of micro-organisms, but Farmer found that when enough of their basic poverty-related needs were being met, his patients did a fine job of keeping up with the medications. Kidder related an encounter with this woman who had accepted the idea of the TB germs and did well at sticking with her meds, but then surprised Farmer by telling him later that someone in the community had cursed her with the TB and she was going to take revenge. When Farmer called her on it, she responded (in Creole), "What, are you incapable of complexity?"

This is a helpful thought for someone like me, putting together a worldview that has room for both allopathic & non-traditional medicine, plus mystery and miracle and faith, that maybe needn't feel bad for a touch of superstition as well.

But no Voodoo for me, thanks anyway!

Accepting the complexity of the seemingly-contradictory may also be a helpful concept in threading the ongoing controversy regarding the nature of autism...

Been thinking about that, will post more another day.

Meanwhile, I do recommend Mountains Beyond Mountains. Much food for thought about the roots of poverty, and the interconnectedness of the world, and what one dedicated person can do. (I also recommend Three Cups of Tea, by Mortenson & Oliver, which I read a year ago -- another account of one dedicated person making a big difference on the other side of the world, in which mountains also figure both literally and metaphorically! Connections, connections!)

Thursday, November 13, 2008

Taking the Lane

I've mentioned a couple of times that I have a rather nice bike-commute to my part-time job. It takes about 20-25 minutes each way, most of it is either bike lane or bike path, some of it is lakefront, and there are just enough inclines to make it a bit of work without being too discouraging.

The most dangerous bit is a left turn that happens near our house, crossing a busy street. Left turns can be tricky. In general, the safest way is also the scariest -- you have to leave your bike lane, merge into traffic and act like a car for a bit, blocking other cars until you've completed the turn.

This maneuver is called "taking the lane."

Now, one doesn't HAVE to take the lane. The more timid route is to come to a dead stop in your bike lane, wait for all the traffic both ways to pass, and then quickly cut across the whole street. Trouble is, there may be other bikers behind you, who may or may not want to turn themselves.

Alas, my bike commute ends for the season when the Daylight Savings switch comes around in the fall, even if the weather is still good. Once we "fall back," the left turn near our house on the way home begins to happen after sunset. And I don't play traffic games on a bicycle when dark is falling!

In past years, this is when I begin to turn into a hibernating pudding. At the time I most need the exercise (yes, I've finally realized I do have some seasonal-affective issues, on top of the holiday feastings), I lose my best regular workout. Fortunately this year, the Couch to 5K training program came along just in time. I'm midway into week 3 now, and it still feels pretty do-able. We're also getting an exercise bike to go with the treadmill. Maybe after the 5K I should train for a triathlon? Nahh, let's not get ahead of ourselves...

Anyway. These past few months I've been blogging have been an interesting "take-the-lane" time for me in other ways too. I've found myself to be more of an idea person, and being unusually forward in acting on those ideas. Things as small as -- getting in touch with the principal & PTA co-presidents to inquire whether there might be some way to get the city to do a better job of snow-removal on the sidewalks across from the elementary school, which was a real pain in the patoot during last year's record snowfalls. (My e-mail turned into a PTA board meeting agenda item; people-who-know-people inquiries are underway).

Two potentially larger things are spinning with my plates now too. Remember my dad's lovely review of beyond.words by Suddenly I got the itch to try & bring the production to my city! I've been in touch with the director, and the booking agent, and some contacts both in the arts & autism community around here... it may or may not happen, particularly in this economic climate, but wouldn't it be too cool?

Second, I've been taking some steps on my idea of creating an online information source and support group for linear nevus sebaceous syndrome, something that is sorely lacking on the web right now. I've got a potential partner lined up for maybe providing the domain & web hosting, and I've collected a bunch of information from the medical library -- working on a draft of the site, in all that free time of mine.

Lots of "taking the lane" going on, even with the bike commute over for the year! Now that I've told you all this, it gives me extra accountability to keep moving on these projects. I'll let you know.


And in further updates: we're doing better on the sleep front, helped by melatonin, nap management, a white noise machine, and we're now waiting/weighting on the weighted blanket to arrive by mail. Maybe the dimmer switch is moving in the right direction too. We can hope.

And yes, we made two months seizure free! Woo-hoo! Neurologist appointment later this morning (I really must go get ready for the day)... we'll see what that conversation brings.

Monday, November 10, 2008

Getting Giggles, Take 2

Way back in August I posted how Joy had a reputation at daycare for getting giggles.

We've just found a new context, with a zombie-parents twist.

Joy's difficulties in getting to sleep are continuing, particularly at home. She is managing to nap some at daycare, whether due to peer pressure or her Peapod Plus travel bed or her borrowed weighted blanket (top priority for this week - chasing down our OT to give a weight-recommendation so we can obtain such a blanket for home too).

I almost thought I was seeing a pattern where the few nights she was sleeping through were happening after those daycare naps. That pattern broke with a crash on Friday night, though, after a deep 2-hour daycare nap. That night she almost didn't let the melatonin put her to sleep at bedtime, then woke up at 12:30. I thought I'd try something different, and took her to attempt co-sleeping in the guestroom. She didn't do more than drowse the rest of the night (though at least she was fairly quiet), and I didn't want to take her back to the crib to hoot & holler until JoyDad was up for the day, because that would killed the rest of the night for BOTH of us.

Anyway. We decided to try cutting out naps altogether for the weekend. Not that she'd been actually napping at home for quite a while, but at least we'd been putting her in the tented crib for "quiet time" for a chunk of the afternoon.

Saturday, after playing outside in fallen leaves instead of napping, Joy got very snoozly and almost fell asleep on the floor in the late afternoon, but perked up some after dinner. Then as bedtime approached, she started getting giggly. Wild, over-the-top giggles. At first it made us laugh too, until it was clear that quiet lullabies and rocking and even the melatonin weren't causing the giggles to stop. So we just put her to bed, where she giggled and thrashed for about 5 minutes before crashing into sleep.

Slept all night, it was very very nice!

Tried it again on Sunday. I realized that I'd heard those giggles recently before. They had happened when she'd awakened at 2:30 or 3am on previous nights, and had been vocalizing for 2 or 3 hours -- the vocalizations would change to those wild giggles. Overtired, perhaps?

Joy's church volunteers reported that she was quiet, tired, low-energy all evening. It wasn't until we got her home and started getting ready for bed... that the wild giggles began again.

This time they didn't stop when she went into the crib. It took something like an hour and a half to crazy-giggle herself to sleep, which wound her parents up enough to push their sleep even later than that. But at least she slept through, which was something.

The saga continues! Tee hee hee hee! MuuuuAH-HA-HA-HA! Zzzzzzzz....

Saturday, November 8, 2008

Of Flu Shots and Superstitions

Well I ain't superstitious,
But a black cat crossed my trail...

-- bluesman extraordinaire Willie Dixon

Generally I prefer to think that superstition and medicine shouldn't have anything to do with one another.

As I've said before, I'm an evidence-based kind of gal, and I like to have a medical team with the same basic outlook.

On the other hand, when I updated Joy's excellent neurologist on her lovely on-going seizure-free string (going on 2 months this coming Tuesday!), he glanced around and said "Quick, touch wood!" We laughed together as he jokingly allowed as how pediatric neurology had more to do with superstition than one would guess...

OK everybody, touch wood for us! Quick! Doctor's orders!

I also found myself doing something perhaps related to touching wood at Joy's recent primary care appointment. I got her a flu shot. And I requested a thimerosal-free dose.

Now, intellectually I am thoroughly convinced by the studies that, time after time, fail to find any connection or correlation between thimerosal and autism. In addition, if there were any connection, by now we should be seeing decreases in ASD diagnoses since thimerosal began to be taken out of vaccines as far back as 1999 -- and that drop has not happened.

So why did I ask for the thimerosal-free formulation for Joy?

Touch wood! I don't have any better reason than that. And I'm a little bit peeved at myself, and a lot frustrated at the anti-vaccine movement that has managed to instill this gut-level unreasoned uneasiness, even in me. An evidence-based kinda gal, or so I like to think. Emotions are such pesky beasts, aren't they?

The flu shot, recommended but not required, is about the last holdout for the regular use of thimerosal as preservative in childhood vaccines. The latest CDC guideline this year has expanded the recommended population for flu shots. They now recommend that everyone from 6 months to their 19th birthday, and also everyone over 50, get the shot. I think it used to be only up to age 5 for kids. Poor Rose, age 6 this year, got her shot this morning (didn't feel the need to specify formulation for her). Fortunately we didn't have long to wait in the doctor's office for her to stress about it. She cried almost as little as Joy this year, which is to say just a few whimpers -- Rose's whimpers were before the shot, Joy's were after.

JoyDad and I didn't whimper at all when we got ours at our respective workplaces. Or so he tells me, anyway.

Funny postscript to this year's flu shot adventure. Rose came in and told JoyDad that she'd had her flu shot.

JoyDad asked, "Where did you get it?" thinking left arm, right arm, leg, derriere, where?

Rose replied, "At the doctor's office!!"

Wednesday, November 5, 2008

Zombie Parents

JoyDad and I are going to be zombies again today.

No, we aren't seeking braaaaaains. (Well, OK, maybe we need those too.)

Our desperate zombie-moan sounds more like "SLEEEEEEEEEP!"

I referred to sleep-deprivation playing a role in the run-up to Women's Retreat this past weekend.

Here's the deal. Over the past couple of weeks, Joy has been fighting going to sleep. The way she does it is through stimming, both physically and vocally. Loud vocals. Hoots and yelps and giggles. Did I mention LOUD?

It started with just naptime, which is not that surprising because lots of 4-year-olds are ready to give up naps. But then it transferred to bedtime in the evening too, and also to wake-ups in the wee small hours. She can keep it up for hours on end. And when she's doing that loud vocal stimmy stuff, her parents don't sleep.

We have been able to manage the bedtimes using melatonin. Unfortunately, that doesn't seem to affect the 2:30 or 3:00 am wakings. We just asked her doctor for the OK to bump up the dose Monday night, and she did sleep through Monday night. Last night, though, she started up at 3:30am. Of course we'd been up to see the election returns and the acceptance speech... I got up, gave her some Benadryl, rocked her till 4am, then put her back in the crib still awake. I think she might have dozed a bit, but then started in again.

Therefore, JoyDad and I have basically been up since 3:30am. Again. With headaches, and fighting our colds.

At least Rose sleeps through it all, though I have no idea how, because they share a room!

My hunch is that this will eventually be like the whole biting thing, and the dimmer switch will eventually slide back the other direction.

Till then, though, this is taking a pretty big toll.

Ideas welcome! Thank you in advance for any input...

And in regards to the events that kept us up watching the TV, I'd like to close with a line from a pre-election prayer that came around by e-mail, from the Mennonite Church USA Peace and Justice Support Network.

We pray that all candidates, both those who are elected and those who are not, will seek Your justice and Your peace in the world.


Tuesday, November 4, 2008

The Power to Lift Up

What an amazing Women's Retreat!

JoyDad deserves a great big hug and shout-out for this. Despite severe sleep deprivation and a way-late gig on Halloween night, he sent me up to the northwoods anyway. Another big hug and shout-out to our pumpkin-patch friends (they really need aliases!), who not only provided playdate for Rose for most of Saturday, but then came over and helped JoyDad make dinner that evening.

But I didn't know about the dinner till later. Too busy being uplifted up in the north woods, with twenty-some other church ladies. Each participant got one of these greeting cards -- would you believe, the artwork is called "Dancing for Joy"!

The power to lift upYou can buy these greeting cards online at Fellowship of Reconciliation.

The weather was stunning. I went out by myself and walked/jogged the third session of my first week of Couch to 5K training in the woods. Then on the way back I fell in with a party of walkers from our group, and walked and talked with a friend... who turned out to be looking to start a 5K training program herself but hadn't found one yet! And, her goal definitely had to do with actual race-running, something that Auntie RatM was encouraging me to do but I hadn't quite committed to yet. Well, now I've got a racing partner. Talk about your just-in-time blessings!

I got back from the run/walk just in time to do the uplifting craft project. If you weren't curious enough to click on the link last time, I'll just say it right out -- we were making purses out of brassieres! I had bought a fun polka-dotted padded confection at a thrift store, but then found out that the organizers had brought along a bunch of extra bras for anyone who needed one to work on. There among the extras was a much smaller bra, with smaller polka-dots in the same color palette as the one I'd brought. The coincidence simply cried out for a mother-daughter set of purses. So I made one for Rose. (She loved it, and proudly took it to church on Sunday, carrying a teeny-beanie-bear in it!!)

Uplifting Purses
So many uplifting words, both in conversations and in our more formal time together. I'll share three quotes here. First, the words to a song from Sweet Honey in the Rock, inspired by a Chinese proverb and performed by a trio from our group:

Where there is light in the soul
there will be beauty in the person.
Where there is beauty in the person
there will be harmony in the home.
Where there is harmony in the home
there will be honor in the nation.
Where there is honor in the nation
there will be peace in the world.

Then, from a translation of Psalm 91, from a book called Psalms for Praying by Nan C. Merrill:

Those who dwell in the shelter of
Infinite Light,
who abide in the wings of
Infinite Love,
Will raise their voices in praise:
"My refuge and my strength:
In You along will I trust."

And finally, our sending hymn. The song is called Benediction, composed by Patty Shelly, who happens to be a friend of our family. She led this song herself as the sending at my mother's memorial service three years ago... I'll leave you with these words today.

The Lord lift you up,
The Lord take your hand,
The Lord lead you forth
And cause you to stand
Secure in God's word,
Seeking God's face,
Abounding in love,
Abiding in grace.

Sunday, November 2, 2008


OK, I'd like to put in my order right now for the next five years' worth of Halloween weather.

Make it just like that again, please!

We had a nearly-70-degree day on Friday, clear and sunny, which meant that trick-or-treating weather was in the 50s. The girls each wore a few thin layers of clothes under their costumes, which was plenty. (For comparison's sake, sometimes the temperature has been below freezing. It makes costuming... challenging!)

Speaking of costumes, Rose went as Lucy the Diamond Fairy from the Rainbow Magic series of "chapter books" by Daisy Meadows. Joy was Lucy's diamond, which meant wearing a big diamond-design of sticky-felt on a black sweatshirt, both chest and back. (Yes, yes, I know, Lucy in the Sky with Diamonds and all that. Just a little inside Beatles joke for the aging-hippie parents/grandparents of all those young chapter-book readers, I guess.)

Joy didn't have much interest in holding her candy bucket, and she really would have preferred to hang out and stim in fallen leaves rather than go from door to door. However, Rose and her friend were great about letting Joy take turns ringing the doorbell, and Joy also did do a good job of putting candy into her bucket.

And now, the moment you've all been waiting for: the pumpkins!

First, Joy's jack-o-lantern. You'll remember that Rose had drawn a bunch of choices for her, and then gotten her to pick one. Here's the one she picked:

And here's how it turned out on a somewhat rounder pumpkin:

Rose's Jack-o-LanternThen we had Rose's pumpkin. I had talked her down from wanting to carve "Happy Halloween" to just the word "Boo!" However, not content with just a "Boo!" she went on to draw a creative face as well for me to carve.

JoyMama's Obama-lanternNext came my Obama-lantern. The stencil worked very nicely, although the next day I had to shore up the sunrise-bit with toothpicks, because the crosspieces were so slender.

JoyDad's Jack-o-lanternFinally there was JoyDad's contribution. I think that if you're applying pumpkin-carving to the election, his comment may have been even more apropos than my own...

Finally, here's the full lineup in all its glory:

Four jack-o-lanterns in a row
Hope you all had a happy Halloween!

P.S. Women's Retreat was most excellent.
Will post about it later in the week.