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!

Photo Wednesday: Boundaries

Awwwww!!

That little charmer was yours-truly in 1968, at the age of not-quite-one. Look at all those lovely little icicles on the Christmas tree! So ridiculously tempting! My parents obviously didn't quite trust me not to be too enthusiastic too close to the tree... hence the artificial boundary. (If you look closely, you can see that I managed to snag an icicle or two anyway.)


I didn't exactly imagine that we'd still putting our Christmas tree out of reach with a four-and-a-half year old, but such is the way of things around here. The "safe" place for the little artificial tree (as safe as it gets, anyway) is on top of the stereo cabinet. No glass ornaments, just in case.

And yet, Joy's gotten so much better about boundaries in the past few months, starting with the oft-mentioned fence. It's gotten to the point that we are able to leave doors open to the rooms on the back hallway where she's not supposed to go, and she just... doesn't go there. Her therapists have commented on how Joy has even started to treat the square carpet in the living room as a boundary to be respected:


Maybe if things are going well next December, and Joy's dimmer switch for boundaries hasn't slammed in the opposite direction, we might consider a real tree. It's nice to be able to imagine that from here.

Meanwhile, Rose has been setting some boundaries of her own. Check out their bedroom door: Girls Club! Keep Out! Do not disturb, do not disturb! Stay out! Do not come in!

Fall Comes to the Garden

Our vegetable gardening is one of my favorite spinning plates of the summer months.

I learned to love gardening from my father, and the basics of preserving what we grew from my mother and my father's mother. The backyard garden behind the house where I grew up was a continually expanding project. Every year Dad would rototill up just another smidge of lawn, until eventually the garden ballooned to take up almost a third of the yard.

Our main vegetable patch here has stayed stable at 20-some feet per side, but we expand by finding new flowerbeds in which to plant produce. Rhubarb replaced hostas; basil replaced pampas grass; okra (with its beautiful hibiscus flowers!) replaced rose canes; a strawberry bed replaced a stand of Snow-on-the-Mountain; and this year my front flower bed held rainbow chard instead of salvia.

When the garden is in full swing, it's a feast for the eyes as well as the tummy. Here's a shot JoyDad took back in August:

Especially great crops this year: bok choy, kohlrabi, beans, peppers, the aforementioned chard. Strawberries and sour-cherries did pretty well too, as did the rhubarb and okra. Also mulberries, not in our yard but we picked and froze a whole bunch from a tree on nearby park property. JoyDad keeps pickling hot-peppers:

Joy is willing to partake of just about everything we grow, even the kohlrabi and the pickled beets! Rose's favorites are the fruit and the sweet peppers and the cherry tomatoes. She likes rhubarb upside-down cake too.

I know I keep harping on the difference this summer's new fence has made to life with Joy in our back yard, but it's really helped with the gardening too. I can now let Joy play on her own nearby while I pick raspberries or go into the (separately fenced) garden to do some harvesting or pull a few weeds. So liberating to only have to keep half an eye on her!

The garden is winding down for the fall now, though. We've had a couple of almost-frosts which have slowed everything down. The tomatoes are petering out, we'll get one more bok-choy stir-fry, the beets and beans are all in, pretty soon it will be time to bring in the butternut squash.

Growing so much food is a help to the pocketbook in these troubled economic times. But mostly it's good for the tastebuds, and the soul!

Special Exposure Wednesday: Northwoods Getaway

It was a long ride for a short vacation -- seven hours in the car each way, leaving early Friday morning (3:30am!) and back home by Sunday afternoon. In between, there was a lot of work to do. This was the traditional "close the family cabins for the season" jaunt to the Upper Peninsula of Michigan, a brief sojourn at the wooded lakefront property that's been in JoyDad's family since 1950. We stayed in one cabin, JoyDad's father and brother stayed in the other.

It would have been hard to improve this visit, other than making it about a week longer and adding a few more JoyDad-family-members who weren't able to come.

First, the colors were spectacular.


Joy loved all the stuff on the ground to play with: the leaves, the pine needles, the plants and little trees. She even loved the big trees:


We were thrilled by how well she stayed in one area. Something of the dynamic that exists in our fenced back yard (whereby we no longer have to hover over Joy every second in fear of her dashing away) was operating up at the lake too. It extended indoors as well, where she stayed well away from the woodstoves and got into almost nothing she wasn't supposed to get into. She did unusually well at walking on the roads too, where earlier this year she kept making breaks into the woods:


It made walks so very pleasant!


We also got to take the pontoon boat for a spin or two, before hauling it out of the lake to put into storage.


It was so lovely not to be dealing with seizures. Last time we were at the lake, the day-by-day knock-down seizure count was 3, 2, 2, 4 -- each with its attendant recovery fuss. We've had seizures every time we've traveled in the past two years. Except for this weekend, where the counts were 0, 0, 0. Joy neither fussed nor bit herself, almost the entire time we were up there (the ride home didn't quite fit the bite-free pattern, but then who wants to have to leave the lake?)

Joy didn't spend as much time on the pier this visit, having too much fun stimming on shore, but Rose has always loved the pier and took advantage of every possible minute before we had to break it down for the winter. She's an awesome hula-hooper:


And I've saved the best photo for last. This is Rose at the end of the pier at sunrise. Doesn't it just look as if she's about to step into heaven?


Bonus points for anyone who can guess what late-seventies movie image this sunrise shot brought to mind for me, before you click & get the answer!

In Praise of Awesome Community

We now return to our originally-scheduled programming, which involves the enumeration of blessings.

First off, thanks to everyone who's been reading and commenting and sending prayers and positive thoughts about our Rats'm Frats'm Blankety-Blank Seizures. We're pretty clearly back in seizure-land at this point, going at the rate of one knock-down per day with several disorienting single-jerks (plus the ongoing internal electrical storm that has been present for the past two years at least). Good news is, there was only the one big blue-lipper so far. The subsequent ones have been about 10 seconds in duration and have been much easier to shake off.

Then there's the awesome meat-space community (so to speak)!

We've got such a wonderful network through our church. The mom with whom we used to daycare-swap has coordinated for us a full roster of volunteers to accompany Joy one-on-one at Sunday School and nursery, plus give me a few minutes before and after worship for conversation. There are enough volunteers that nobody needs to step in more than once a month, and Joy is accepting enough of a wide range of helpers that this rotating whirl doesn't seem to faze her.

There's also a strong neighborhood network. On Friday I needed to go to Rose's end-of-summer-camp party, which conflicted with one of Joy's home therapy sessions, and there needs to be a parent or other adult in the house for the therapy to take place. One phone call next door, and the neighbor on the other side of the fence (who brought the potato salad to the fence party) was all lined up to come on over.

I was able this week to line up two other neighborhood moms with Rose-aged kids to take on the regular task of getting Rose home from school on Tuesdays and Thursdays, because that too conflicts with Joy's therapy hours.

On top of that, I've got a list of eight families (spanning neighborhood and church) willing to be called on short notice if we are in need of a bit of respite Joy-care, plus three other families who didn't think Joy-care was up their alley but would help by bringing a meal if need be.

And then there's the dear friend who brought her daughter over for a spur-of-the-moment playdate Friday night after the end-of-summer-camp party, and brought wine as well so she & I could each have a glass as the summer sun went down...

I could list more, but that gives you a flavor for it! Community makes Joy's world go 'round. We are so very blessed.

Good Fences, Good Neighbors

I've mentioned our new back yard fence a couple of times now. That fence, installed on July 1, is in some senses the highlight of our summer so far. We have a long back yard, and only the back edge of the property had a fence when we moved in. The neighbors on one side installed a fence on their side about 7 years ago when they put in a little pond, but that left a huge expanse of potential escape routes (214 feet, to be exact).

We started out hoping that Joy would soon outgrow the dashing game, but as this spring arrived it became clear that back yard play without a fence was going to continue be an exercise in... well, exercise. Whoever took Joy out to play had to stay hyper-alert, and within 5 feet of her at all times. Her sprints happen with little to no warning, and she is ridiculously fast, and she will not stop for, say, traffic or the steep concrete downhill steps not far from our property...

But on July 1, it took a crew of 4 guys from 8:00am to 2:30pm to install a lovely 5-foot cedar picket fence, two gates, "nice" side in (so as to eliminate the crosspieces as footholds).

We didn't want a privacy fence, because we have a great relationship with the neighbor we were fencing off. That relationship continued during the fence-planning & installation process. Even though we discovered that a line of hostas she'd put in bowed too far into the property line and the fence would clip them, and that we'd have to hack back one of her honeysuckle bushes at the back corner of the yards, it didn't fuss her up at all.

And then yesterday, she brought a potato salad to our fence party.

Ever been to a fence party? Neither had we. But we really wanted to celebrate this big improvement in our lives. So we threw a big ol' back yard barbecue, and invited members of our various posses -- church, neighborhood, Joy's daycare & therapy folks, assorted friends from all over town. Summer weekends are full of travel and other commitments (especially since we only gave people 2 weeks' notice!) but we ended up with almost 30 guests, about a third of them kids.

Props to JoyDad for yeoman service at the grill, and getting all the food from fridge to buffet table pretty much single-handedly! I was able to mingle and attend to other details, and keep an occasional eye on the kids who were frolicking with wading pool and sprinkler and bubbles further down the yard.

So who was keeping an eagle-eye on Joy? Nobody, and everybody. Various parents took turns hovering to make sure the kids didn't create too much havoc. But Joy didn't really need a lot of extra supervision! The fence eliminated the urge to dash, and she happily hung out in the middle of the gaggle of other kids, only occasionally popping out to seek an adult to take by the hand and lead into the action.

One of our friends from church, who volunteered this past year as a one-on-one aide to enable Joy to participate in Sunday school, was watching the wading pool scene with great interest. She knows first-hand how hard it can be to keep that hyper-awareness when Joy is in escape mode, and what a departure last night's backyard vibe was from that, as Joy played contentedly in the midst of the kids.

"She's so FREE!" was her remark.

Yes, yes, yes! We'd been aware that the fence had already been mighty liberating to us as parents, but our friend's remark crystallized it for us: that fence is liberating to Joy as well.

Good fences, good (friends and) neighbors, and a mighty fine barbecue.

And tomorrow... we have the kickoff meeting with a new therapy team to begin intensive autism therapy for Joy. Stay tuned.

Five reasons to be cheerful!

1. No seizures yesterday!
   
2. Wonderful long nap yesterday too (that would be Joy, not me, but still).
   
3. We've had a fully-fenced back yard for a full week -- no more mad dashes into the street, with mama in hot pursuit!
   
4. Joy is beginning to prefer her sister's high-backed booster seat in the car to her own almost-outgrown convertible carseat, and is staying in it well.
   
5. Beautiful day for biking to work. Take THAT, Big Oil.