Tagged, Redux

I've circled back to blogging about tagging several times now. My first Tagged post was about Joy's Project Lifesaver radio tag, for tracking purposes in case she wanders. (Now that she's in kindergarten, we're extra-glad to have that safeguard.) Just lately, I succumbed to the lure of tagging via blog-meme.

Our latest new form of tag in the JoyFamily is a disability hang-tag for access to priority parking spaces.

Parking lot safety for Joy has long been a concern of ours, but the possibility of a hang-tag didn't really click for me until I had a conversation with Joy's special educator about dropping Joy off at the start of the school day. I've got my work-schedule arranged so as to be able to do both drop-off and pickup for the girls at school, so we aren't taking advantage of the "short bus" that drops kids right by the back door. If you don't bus, parental drop-off is on the far side of a busy street, with a walk either up or down-hill to the crossing guard. As an alternative, Joy's special educator mentioned that some parents do a quick drop-off in the handicap spots. Of course, for that you need official dispensation.

Earlier in our journey I'd have had more of an internal debate. ("But she's not handicapped -- she's just delayed a little -- we don't really need this -- why mark her as more different than she already is" -- etc.) At this point, though, I've learned to agonize less over taking advantage of available resources and designations that can make our lives easier. The application for the tags was a simple form, just a download away. It needed a physician's approval, which Joy's doctor gave easily on request. Two hang tags soon arrived in the mail, one for each car's glove compartment.

So far, I have used them sparingly: only at school, and only at drop-off. In general I'd prefer to have Joy learn to walk with me and her sister and the other kids. Sometimes we make it the whole 15-minute walk home! However, if there's rain and puddles, or new snow, the walk becomes too much of a stimmy distracted battle. It's exhausting, not entirely safe, and sets up a miserable mood for turning Joy over to school staff. So on those days, out comes the tag and we drive practically up to the door.

I haven't yet used the tag in a public parking lot yet, but I sure feel better knowing we have the option. Parking lots can be scary-rough -- there was a set of helpful parking-lot tips the other day at Stuart Duncan's blog with suggestions for the situation. (I added the hang-tag suggestion in the comments!)

It has crossed my mind that, with Joy's invisible disability, we might come in for some pushback from the self-appointed parking lot police -- the folks who see fit to call challenge if they see someone they don't think looks disabled get out of a car in a handicap-accessible spot. I was reminded of this yesterday when Rachel posted at Journeys with Autism about the barrage of doubt and disbelief that people with invisible disabilities often face. She mentioned one woman who developed a snappy comeback for the doubters: when someone issued a "you don't look disabled" parking lot challenge, she'd fire back, "And you don't look like a doctor!" (Rachel's post and the comments were much more detailed and nuanced than this little example; well worth the read.)

I gave a quick delighted high-five in the comments about that comeback -- it's so the perfect response that you wish you'd thought of at the time! I've been re-thinking my enthusiasm somewhat, though. It strikes me that if any parking lot pushback were to come our way, I'd rather be prepared with a gentle, educational answer than a snappy zinger. That way if the challenger turns out to be a well-meaning soul and open to new ideas, I might be able to send them away thoughtful rather than cranky/defensive. And if they really deserved the edgy comeback after all -- well, then I'll have been nicer to them than they deserved. Which wouldn't be so bad.

I should make clear that my re-thinking is in no way meant as a prescription for how I think everyone ought to react to a parking lot challenge. Just my own thoughts and planned approach. A person with an invisible disability who has had it up to HERE with spending precious energy trying to educate people who won't listen anyway -- may well choose a different approach entirely.

The snow has been falling all day today. Glad we've got that hang-tag for tomorrow.

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!

Tagged!

The young gazelle darts away from the wildlife researcher, back into the savannah. Her new radio-transmitter tag obviously annoys her slightly, but soon she will ignore it and continue her routines as usual...


Joy's been tagged! We're fortunate to live in one of the counties offering Project Lifesaver, a locator service for people at risk of becoming lost and not having the wherewithal to get themselves found again. Here's an article I linked to in a prior post, talking about the partnership between Project Lifesaver and law enforcement.

We had to call our local sheriff's department to start the process. We set up an appointment, and this week two deputies came out with the equipment and a stack of forms to fill out. It's always interesting when forms try to cover multiple situations (in this case a range from kids with autism to elders with dementia or Alzheimers) -- some of the questions can be laughably inapplicable!

In addition to the bracelet on Joy's ankle, about the size of a women's digital wristwatch, we were given an ID number and transmitter-frequency number. In case of an escape emergency, we're to call 911 and tell them that we're with Project Lifesaver. If we didn't happen to have the numbers on us, they could look them up, but having the numbers saves a few moments of time. We also got a small battery-tester device, that we're to test the anklet with once a day and record the results. Then at the beginning of each month, we have to pay a visit with Joy to the sheriff's department, turn in our testing log, and get a new battery and band. Batteries should last 45 days, but they change them monthly to be sure, and you get a new band because they have to cut the old band to get at the battery.

Joy didn't like getting the band put on, and tugged at it a couple of times the first evening, but since then has pretty much ignored it. I was glad to see that it wasn't as big a device as I was fearing. It would be less publicly noticeable if she'd wear it on her wrist like a watch, but I think she'd probably be biting at it all day. We're going into fall weather anyway, so it'll be invisible under long pants except at swimming lessons and such (yes, it's waterproof!)

There are consumer products on the market to do this kind of tracking, such as Ion Kids, but in our county at least, Project Lifesaver is grant and donation-funded for now, and also gets us that partnership going with law enforcement first-responders.

So leaving aside our speedy radio-tagged gazelle, there's another kind of tagging I wanted to address. For my family readers who don't inhabit the blog world on a regular basis... I've discovered that there's a practice among bloggers that has a bit of a chain-letter vibe to it, where bloggers get a set of fun questions and answer them in a blog post, and then "tag" several other bloggers that they'd like to see playing the game as well. (Here's an example from Trish at Another Piece of the Puzzle.)

Bloggers also can recognize one another's work and create links to their favorite reads by means of awards. I was recently recognized by Barbara at TherExtras with the "Premio al esfuerzo personal" for "excellence in the expression of values in a blog". The values in question in this case, as defined by the award giver: "movement [as in body, not the other b-word], personal responsibility, politeness, acceptance, words used well, and love." Thank you Barbara! I'm honored!

I'm also going to break the rules, because what I'm supposed to do is post the rules that go along with the award, and then pass the award along further. I'm going to respectfully decline the opportunity, with thanks. In general, I figure not to participate in "tagging", mostly because as I said yesterday, my post ideas are outrunning my time. If you do tag me with the fun-questions sort of thing, I may answer in your comments, but probably not on my blog.

However, I can't finish this particular post without also acknowledging having received another honor, one that I don't have to feel guilty about not passing along because it's all mine! In honor of our meeting last week, Mama Mara says, "I officially dub JoyMama as Mama Mara's goddess of freaking miracles." Much appreciated, Mama Mara -- you rock, too!

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.

Escapism

Quoting police sergeant Dave Laude, from a July 16 Cap Times feature article on Project Lifesaver, an electronic monitoring program for people with autism & Alzheimer's:

It's amazing what these families have to live with. One mother came into my office to sign her son up. The first thing she did was walk around shutting all the doors so he couldn't get out. Can you imagine having to live like that every day?

Consider it imagined. Consider it lived. That's exactly what I do when I take Joy somewhere like a doctor's office, where I'm going to have to let go of her hand.

Joy isn't quite the little Houdini that some of the other kids in the article are. She can only open easy doorknobs, and gives up pretty quickly. We recently installed a lovely backyard fence, which put an immediate damper on her former dashes for the street, and she hasn't attempted either climbing or digging.

Still, in spite of all the watching and hand-holding and planning and door-closing, Joy does escape sometimes. As the article put it,

No matter how vigilant parents are, children with autism get away. In fact, escape stories are family lore.

Our classic escape story happened last fall, on a playdate at a mall play-place with fun tunnels and climbing toys, and a 3-ft high perimeter wall lined with benches. Joy had never climbed the wall, so I thought I was safe to stand with the other mother at the playplace entrance, and keep an eye out that Joy didn't come running out that way. All of a sudden, I realized that I didn't see Joy anywhere. My first thought was that perhaps she'd had a seizure in a tunnel, or out of my line of sight. So we spent a minute or two eliminating that possibility. Then we looked to the great big mall and all the people in it -- and fortunately Joy was trotting back toward the play-place, shepherded by a friendly mom. "She did the right thing and wouldn't talk to a stranger," the guardian angel said, "but I figured she had come from here."

It's true, Joy won't talk to a stranger, since she barely talks! However, she might give that stranger a hug and kiss, and trot away happily with them... we were incredibly lucky that time.

Last night we had another related incident. Joy takes swimming lessons at an indoor pool, and we stay a while after to free-swim. She'd been sitting happily on the pool steps for several minutes, so I took my eyes off her for just a second to watch her sister do something. In a flash, Joy was out of the pool and running around the perimeter at full tilt, in all its slippery danger, and I couldn't dash after her myself without taking the same risk. She slipped and fell once, and I almost caught up, but she popped right back up and kept going, right past two lifeguards before I could call them to intervene. Finally I was able to yell ahead to another mom at poolside to intercept her. Dangerous and embarrassingly conspicuous -- why can't you just holler at your kid to STOP, huh?

We're going to look into signing Joy up for Project Lifesaver, if not immediately, then certainly in time for kindergarten.