Ritardando

It's handbell concert season again, which means the schedule is crazy and my fingers are aching from holding two (and sometimes three!) bells in one hand simultaneously.

So perhaps it's natural that the bells should come to mind in relation to a cluster of posts last week, started by the incomparable Mama Mara, who posted a powerful reflection called Retarded Isn't Stupid, Mama Mara! Then came Cale over at Spectrum Siblings, who posted Retarded Isn't Stupid, Cale! And StatMama followed up with Developmental Disabilities, in which she pointed out that the word "retarded" quite literally means "slow".

And what's so bad about "slow"?

Slow is something we've actually been working very hard on with the bells. We've got a couple of pieces that that derive their beauty from a slow tempo -- like Gershwin's "Prelude No. 2" which Gershwin himself described as a "blues lullaby" but I think is actually a mighty seductive piece, not necessarily conducive to sleep! Another of the pieces, Brahms' Hungarian Dance #5, is chock full of tempo changes... and wouldn't you know, the big challenge is the slowing down (ritardando) in coordination!

Joy does not technically have a diagnosis of mental retardation, though in an earlier version of the DSM that would likely be the box that fit her best. (Diagnostic substitution. Powerful stuff when it comes to arguments about autism and "epidemic" language...) Right now we're calling it "developmental delays" or "cognitive issues" because we really don't know how to tease out what aspects of the delays are mediated by the autism, and what would be there if the autism weren't. Certainly her diagnosis of linear nevus sebaceous syndrome traditionally comes with a mental retardation component -- but not always. And we surely do have the sense that Joy isn't letting us in on everything that's going on in that mind of hers. In the words of her school district team leader: "Her file drawers are full! We just don't have the key to the cabinet."

But whatever word we use to describe Joy's trajectory so far... there's definitely a component of slow.

And why are people so down on "slow"?

I'd been plotting a post about the virtues of "slow" myself, and then I came across a wonderful column in this week's Mennonite Weekly Review, by Melodie Davis, called Slow is Good -- Very Good. It's gorgeous stuff, too good not to share. I'll intersperse her words with mine, OK?

Slow is a walk.

Slower still is a walk with a toddler.

Slow is a porch-swing and a long tall cool drink.

Slow is reading aloud.

Slow is a stew simmering all day in a crock pot.

Slow is incubating a baby for nine months.

Slow is hours of nursing, rocking, dozing with baby.

Slow is the food you started from seeds in the ground in the spring, weeded, watered, harvested, preserved, and didn't consume until the middle of winter.

Slow is melting into the arms of your spouse and just letting the moment linger, not worrying about what's next.

Slow is a delightful pace for what might come next as well.

Slow is focusing totally on the person talking to you during coffee hour at church and not thinking about the three other people you have to catch before they scurry away.

Slow is focusing totally on your child, giving yourself over to whatever activity they're playing, for as long as they care to keep it up.

Slow is meticulously hand-stitching every inch of heirloom wedding quilts for your grandchildren.

Slow is the sewing basket, and a pile of mending, and a classical CD on the stereo.

Scripture encourages us to be slow to speak and slow to become angry (James 1:19). God is slow to anger (Neh. 9:17).

Prov. 14:27 advises that “a patient man has great understanding, but a quick-tempered man displays folly.”

Moses complained that he was too “slow of speech” to undertake the task of speaking to Pharaoh and being a leader for the Hebrew people (Ex. 4:10). Yet look how God was able to use Moses.

Amen.

And, ritardando.

Random Tuesday Thoughts

How nice -- there's a meme out there to match my random mood.

Don't try too hard to see patterns in any of this.

• Joy was still up in her crib when I got home from handbells after 9pm.
  
  
• Joy is awake in her crib now. Come to think of it, she didn't sleep enough last Tuesday either.
  
  
• My house needs a spring cleaning. Possibly due to lack of winter cleaning. How thick does dust eventually get, if you leave it to its own devices?
  
  
• We bought a new car over the weekend. Actually we put a little deposit down on a Honda Fit that won't arrive at the dealer till sometime next month (it's worth a bit of a wait to get a RED car with a manual trans!)
  
  
• Joy has discovered that the shoulder belt for the booster seat makes a nice pull-toy. Anyone have a favorite 5-point-harness carseat recommendation for kids past 40 pounds?
  
  
• Rose has been trying valiantly to lose tooth number five ("Is it bleeding NOW, mama?") I wonder what tooth-losing will be like for Joy?
  
  
• I had planned to run early this morning. But I'm too achy. Joy & I will go for a nice long morning walk with the stroller instead after we drop Rose off at school. Last time we did this (Friday) we saw a wild turkey at the park!
  
  
• Joy signed "more cracker" at daycare yesterday. Very cool, but feels very Elvis-sighting-ish to me. The singular use of the word "book" (as mentioned the other day) has not re-appeared.
  
  
• How did April get so close to over already?
  
  
• I'm going to go take a shower now. 'Cause April showers bring May flowers.
  
  

Sisterly Generosity

Earlier this week Rose's school had one of those Scholastic Book Fair fundraiser things. I am a little ambivalent about how the kids come home with these carefully handwritten wish-lists that they've obviously done in class, but we've generally let Rose pick a book or two off her list to purchase, and chalked it up to community support.

The day of the book fair, Rose came charging home after school with a friend in tow. The friend had invited her to turn right around and go back to school with her mom for the book fair, and Rose really wanted to go NOW instead of have me take her later after Joy's therapy.

So I pulled out the lone twenty-dollar bill from my wallet, rehearsed with her which two books she wanted to buy, and got set to send her off.

And then she said, "Wait, I want to buy a board-book for Joy."

I didn't have any more money in the wallet, but before I could mention this, Rose had galloped off to her room and pulled out the box where she keeps her allowance. She counted out five dollars, which she was going to put in her bra-purse but I convinced her to take something that actually zipped up to keep the money safe!

Here's what she brought home for her sister:



Between the change from the twenty and her allowance money, she'd had exactly enough with just a couple of pennies to spare.

Joy likes her new gift very much. She's been carrying it around a lot, and this evening I had to make her hand it over so I could get her to the table for supper. She said something that JoyDad, the barista and I all agreed sounded very much like "book."

=================

P.S. Just so it doesn't sound like we've got Saint Rose here or something... you should have seen the power struggle we had over clothing yesterday. It was COLD yesterday morning, and Rose wanted to wear capris and sandals to school. I made her wear long pants and shoes, which wrecked piano practice and the rest of the morning's preparation. After warning her that I didn't want ANY complaints about cold on the way to school, I let her get away with wearing a light hoodie for a wrap. Sure enough, about 5 minutes into the walk, the lower lip sticks out:

I didn't knooooow it would be so cold! It's NOT MY FAULT!

Natural consequences are a real booger sometimes. Heh.

Home, Selectively-Restrictive Home

When Joy had just turned three, we paid a six-month follow-up visit to the pediatric developmentalist / autism-expert who had diagnosed her. We were struggling with some behavior and safety issues at the time. Joy was getting taller, able to reach things on counters and climb onto tables, and she liked the commotion of the results when she managed to shatter a glass or plate.

The expert advised us crisply that we had to strip down our environment. Plastic plates and glasses for EVERYBODY, she said. Pack anything breakable into storage. Consider folding chairs that you can fold up after meals so there won't BE any way to climb on the table. Creating a safe household for Joy comes first.

We were stunned.

We were also... non-compliant. (Heh. We're also not seeing this expert any more.)

Oh, we made a few changes. But they were changes that suited our family. Instead of folding chairs, we just made sure to do a better job of pushing chairs in to the table to make them less appealing for climbing. Instead of ditching our glassware and ceramics altogether, we did a better job of gating the kitchen and putting the breakables away.

I realized at the time that the developmentalist was recommending a chainsaw for a job that kitchen shears could do just as well. What I didn't put together till later was that her recommended changes flew in the face of a very important principle.

Least Restrictive Environment.

Readers who have, or work with, special needs kids in the public education system are nodding their heads in recognition just about now.

The Individuals with Disabilities Education Act (IDEA) includes two fundamental requirements: a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). It also ensures that each child will be served a bowl of acronym soup daily... OK, not really. What the LRE amounts to in the school setting is that you don't shut away or segregate off our kids unless there's a REALLY compelling reason to do so. The presumption is that children with special needs are to be educated among their "typical" peers to the full extent possible.

Who among us wants to be placed under unnecessary restrictions? Either at school or at home?

The trick is figuring out which boundaries and modifications are necessary and helpful for any given kiddo.

The modifications around our house, that we've put in place to have a safe and nurturing environment for Joy, have ebbed and flowed over time. Some things are constant -- in general, we try to help her focus by cutting down the clutter. There's one toy-box in the living room, one in the bedroom closet, and a set of toy-shelves in the downstairs playroom. We try to keep everything easily put-away-able. (Sometimes more successfully than others.)

We also try to keep down the temptation for things that could be pulled down to make a big crash & mess. The Christmas tree was up on the stereo cabinet. There are no plants in grabbing range, though she's growing to the point that she could knock one over if she tried...

Winter 2008 was an intense time for boundaries. Joy was climbing over the back of the couch to jump on the low bookcase that sits back-to-back with the couch, and knocked over the lamp that sat on top of said bookcase. So we bought a hanging lamp with a chain & cord that trails up the wall, and we covered a big piece of cardboard with wrapping paper and set it up as a barrier between the couch-back and bookcase. Joy was dashing into back bedrooms & bathroom at the slightest opportunity, so we kept ALL the doors closed ALL the time. She started pulling the music rack on the piano and dumping Rose's piano books off, so we tied the rack to the back of the piano with a piece of yarn.

In summer 2008 we put in the big barrier, just before I started blogging in fact! We got a fence for our big back yard.

One might think that a fence was a massive restriction. In a way, I suppose it is. But when we went into the backyard with Joy before the fence, we used to have to be on high alert. She had this little game where she would suddenly dash off, without warning, and head for freedom and the street. And she is FAST. So to keep her safe, we had to be within hovering distance, at all times, ready to sprint at any moment.

With the fence, we don't have to hover. In fact, we can give her a whole lot more freedom within that boundary than she used to be able to have. A perceptive friend at our fence party that summer noticed it right away. "She's so FREE!" was the comment.

It's my belief that as Joy came to recognize and heed the fence boundary, she started observing other boundaries as well. We were able to take down the cardboard from behind the couch. The doors in the back hallway stay open now, and Joy just doesn't venture back there. Rose accidentally broke the yarn on the music rack recently, and we didn't bother re-installing it.

The right restrictions, at the right time. A balance that we're continually trying to keep.

Another issue that we see coming up is the question of Joy's sleeping arrangements. She's currently in a tented-crib for the night, and a PeaPod travel tent for nap. These are designed such that she will not be able to get out, and since she's not toilet-trained, she doesn't really need to get out. It's also very helpful to us to have her confined to the crib when she wakes in the middle of the night and plays for several hours straight.

But she has technically well outgrown the specs of the crib. She's strong and getting bigger. We'll have to figure something else out, that can teach her to sleep in a big-girl bed and keep her safe and not impinge on her sister, with whom she currently shares a room. I don't think we're going to need something like these specialty beds (designed for a least-restrictive environment, by the way -- to "help the person live as normal a life as possible, with as few barriers as possible and still be safe"!) It's good to know the range of what's out there, though, as we make decisions on next steps. "Been-there, done-that" stories would be most welcome.

This post was sparked by Barbara at TherExtras, who is currently hosting a blog-carnival on the question of "how you have arranged your home to enhance your child’s development." I'm looking forward to hear how others have interpreted the theme!

Special Exposure Wednesday: Jump for Joy!

This is what happens when Joy pushes her button to ask for "Let's Jump!" (The taller the barista, the higher the flight!)

Say Hey, I Love You

Following up on yesterday's musings! This song makes me happy.

My mama told me, don't lose you, 'cause the best luck I had was you...



Seems like everywhere I go
The more I see, the less I know
But I know
One thing
I love you!

Listening With All My Heart

I was reminded this weekend of a poem by Shel Silverstein, from the book A Light in the Attic, about communication differences.



Here's the text if it's a little hard to read in the image:

Deaf Donald

Deaf Donald met Talkie Sue
But [signed: I Love You] was all he could do.
And Sue said, "Donald, I sure do like you."
But [signed: I Love You] was all he could do.
And Sue asked Donald, "Do you like me too?"
But [signed: I Love You] was all he could do.
"Good-bye then, Donald, I’m leaving you."
But [signed: I Love You] was all he did do.
And she left forever and she never knew
That [signed: I Love You] means I love you.

Talkie Sue may have been a talker, but she surely wasn't much of a listener.

After reading the latest from Rhemashope over at Autism in a Word (more on that later), I found myself trying to remember:

Did Joy ever say or echo anything resembling "I love you"?

It doesn't seem like something that one could possibly forget. But it's been SO long since we've heard those 80-some words that she used to speak, once upon a time. Among all the people who are working with her now, only Lynda at daycare and one of her school-district people have known her long enough to remember hearing her use words. Right now she has no spoken words at all, communicating via her photo cards when we ask her to, or her push-button when it's available, or the occasional "more" sign, but mostly just actions and glances and gestures.

I asked JoyDad, and he set me straight right away. "No, she never did." He had worked more deliberately than I to try to get an echo of "Love you!" back when there were more words floating about, and it just never came.

But here's what she DOES do:



When he goes to pick her up at daycare, she comes running up to him and gives him a great big hug, and sometimes even gives him a little pat-pat-pat on the back.

She gives kisses upon request, and sometimes initiates little puckery kissie-kissie motions.

And remember the Popeye Sighting?

It's no wonder I got confused about how I heard, or didn't hear, the "I love you" a year and a half ago or more. I've been hearing it a lot lately, listening with all my heart. It just hasn't been verbal.

Rhemashope didn't need to hear the words spoken either, but I'm surely rejoicing with her about what happened the other night at bedtime.

Someday. Someday.