Praying With Our Feet -- and Our Magic Markers

"Budgets are moral documents."
-- Jim Wallis, Sojourners

In my Saturday morning post, I spoke of taking a Sabbath and not posting on the 20th.

My congregation was holding a weekend retreat at a center about an hour's drive away, and the JoyFamily drove there Saturday morning for a 24-hour getaway.

We needed the break, from the news and the protests and the computers. The week had been exhausting, days on end with insufficient sleep and way too much adrenaline.

However, the retreat also provided a safe space to go in deeper. With our friends, we were able to explore the moral dimensions of the budget proposal and the protests, in thoughtful conversation and in prayer.

I also brought a bunch of posterboard and a fistful of markers to offer an additional option for a craft project activity: making signs to highlight the Medicaid issue, to be conveyed to the press event on Sunday afternoon.

Several of the signs alluded to the moral implications of the budget-repair bill. I particularly liked the ones that said, "Don't deny a voice for the vulnerable." Two of those signs wound up on the wall right behind the heads of the speakers at the press event, in direct camera view.

But even more touching to me was a sign colored by a little fellow of the age of six, just two days older than Joy. For the first two years of Joy's life, our family did a daycare swap with this little guy's family, so he and she were daycare buddies up to the age of two. They've not been close lately, as he is on a typical developmental path and she is on a path all her own; but he really wanted to create a sign, and his mom traced the words "Protect Medicaid" for him to color and explained just a little bit that this was to help Joy and others like her.

His was the sign I chose to hold at the front of the room at the press event (held here by JoyDad on the bus on the way home.)

If you follow the online debate about Wisconsin's budget, or listen to certain newscasts, you will hear the protesters described as greedy, as rioters, possibly even as un-American.

I'd offer the personal view of protesters as people of peace and conscience and deep conviction, many of us as people of faith. I'm reminded of the children's book that was inspired by our congregation in 2005, Praying with our Feet, about taking peaceful, prayerful action for a peaceful world in the face of an unjust war. (The book is out-of-print but can still be acquired through various vendors at the link.)

We're praying in many ways this week. With our feet at the Capitol building. With our magic markers. With our letters to the editor and our calls and e-mails to our legislators.

Please add your prayers / thoughts / positive energies to ours, in any way you feel so moved.

Included: Walking Home to a Playdate

Joy had a classmate over for a playdate last week after school. This classmate's older sib had been a kindergarten classmate of Rose's three years ago and they're still close, so it was a double-decker playdate of younger girls and older. This was the first time in several years that the younger sib had come over to really spend significant time with Joy.

We started the playdate with all of us walking home from school together, about a 15 minute affair. On my way to school, I had grabbed a couple of little twigs of pine needles for Joy as I often do, because it's a favorite stimmy of hers. This time, as Joy's classmate came running over to us instead of heading for the bus, I realized that the pine twigs could be a great tool to invite her into a bit of Joy's world for the walk home.


So I gave one twig to Joy (who grabbed it with gusto per usual) and one to her friend. I explained to the friend that Joy loves to play with pine needles, and had her try the things that Joy likes to do -- tickle herself with the soft needles, twiddle them in her fingers, crush the needles a little bit and take a sniff of the piney aroma.

Both girls carried their pine twigs the whole walk home.

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!

Hope, Without a Prescription

My previous "Hope" post made its way to a friend of the family from the neighborhood where I grew up.

Her lovely off-blog response included a poem from Emily Dickinson:

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.

So amazingly appropriate for my Joy, my sweet wordless perpetual motion darling.

Hope. Together we learn to sing the tune without the words.