Stuff We Don't Let Her Do

So I was home with Joy today in between school and her afternoon therapy session, and she was happily watching a video upstairs in the living room, and I thought "Surely it wouldn't do any harm to sneak downstairs and answer a quick e-mail, right?" So I did that, and then one e-mail led to another, and then I quick peeked at Facebook, and Joy was still making happy sounds and so several minutes did go by before I trotted upstairs again to check.

And there was Joy, with her sister's new Christmas camera, which had been imprudently left on the mantel that morning.

The camera was on, rather surprisingly, since it's one of those little streamlined smaller-than-a-deck-of-cards cameras with a not-at-all obvious on/off switch.

More surprising still were the photos on the camera.

Uh-huh. Joy had been taking pictures.

Here's her foot on top of last year's Christmas fleece-boa:

Here's an artistic blurred shot out the living room window, with a bit of a reflection from the video that was still playing:

Here's a shot of the cabinet under the TV:

And here's a partial self-portrait (there were more complete ones too):

My girl took thirty-six photos before I showed up and put an end to the fun.

We didn't teach her how to do it. We've never let her so much as hold a camera before.

WHAT ELSE can she do that we've never let her try?

She Has a Dream

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to
college.

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at DisabilityIsNatural.com, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):

Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.

I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.

Expect the Unexpected

I'd read a lot of blogging about the phenomenon. About how kids on the spectrum (and some kids not!) put so much effort into keeping their heads above water at school, keeping it all together during the day. Then they get home where they're comfortable and can let their hair down -- and all hell breaks loose.

I read about it again just this week, as my dear bloggy friend Jess described an absolute mess of an inconsolable evening. Her daughter's aide at school later said, "When I saw how hard she was working to manage herself and to redirect her energy when the stress was too much, I knew full well that we were purchasing our morning with your evening."

We'd gotten the warning from our Agency 2 autism-therapy team leader as well, who cautioned us to be very careful about how much therapy we might be planning to load into the evenings of a kiddo who was going to be working very hard all day at school. We ended up deciding to use the start of the school year as a transition point from intensive-level therapy (24 hours per week in Joy's case) to a "post-intensive" level of 8 hours per week.

So how have things been going at home, this first week of full school days, now that Joy's recovered from that fever she had?

First off, I get the most amazing hugs when I pick her up from school in the afternoon. She crawls up into my arms and hangs on me while I hear about the day from her aide. It feels like somewhat like a big sigh of relief, even though she (of course) doesn't verbalize it. Mama. You're here.

Tuesday, the first afternoon home this week, we chanced things with an impromptu playdate at our house, a family that has an older sib for Rose and a younger sib for Joy. Joy and her friend spent the time happily in the playroom, crashing on the pillows & couch, crawling through the play-tunnel. Joy was more interested in bouncing on her exercise ball and looking at herself in the full-length mirror, while her friend was more interested in filling plates with play-food to serve the mamas, but when they interacted, there were smiles and giggles.

Wednesday we had the first encounter with an evening therapy session after a full day of school. Joy was so happy to see her barista. At the end of the session, the barista commented that Joy really seemed to be taking delight in familiar games with a familiar person. There's that sense of relief again...

Thursday, we went to the park after school with the same friends as on Tuesday, plus one extra. Joy was once again in a good mood, and spent a fair amount of time on the little merry-go-round with all four of the other kids, despite much noisiness from the older ones.

Maybe it's a honeymoon, maybe it's a fluke, maybe it will all fall apart this evening or next week. But so far, this week's expectation-shattering has been every so much nicer than last week's expectation-shattering.

I oughtta have figured out by now to expect the unexpected!

P.S. The latest funniest-things-in-the-world: the act of yawning, and the word "panda."

Bringing Kindergarten Expectations Down to Earth

With the barest little bit of hindsight, I see that I could have framed my expectations differently, going into the first day of kindergarten.

I could have thought: well, Joy has been having some pretty rough therapy sessions lately, especially in the mornings -- and these are with familiar people, in familiar territory. How about we make that the bar for first-week expectations. If it's better than those sessions, we'll be doing fine. Just get her acquainted with the new staff, probably mostly in pull-out situations because the classroom is also new and the number of classmates will likely be overwhelming. If she gets through the days without us being called in for a rescue, that'll be a victory.

If I had gone in with that mindset? Today was a victory. Joy was dry-eyed and in reasonably good spirits when I picked her up, and has been pretty happy this evening too. She was dressed in the same clothes she went in with, and had no bruises on her forehead (though she did have some teeth-bruises on her knees, some of which I saw her make.)

I did not go in with that mindset.

This was the first day of kindergarten, after all! My last baby's first day, and we'd prepared soooo much.

• Delaying kindergarten a year.
  
• Kindergarten practice this past winter and spring.
  
• Visits this month from Joy's new staffers both at home and at daycare.
  
• Taking Joy to the school to meet her new classroom-teacher and spend time in the classroom, and again with her early-ed teacher from last year, just to get into the halls once more.
  
• Creating an extra document on top of the IEP, sort of an update to the present-level but all full of tips and tricks on what goes into Joy's day -- and then meeting with pretty much her whole team on Monday for over an hour to go over it.
  
• Sending extra goodies -- nap tent, a bag full of stimmies, special bag lunch of favorite treats

I figured that we'd get there early enough to try & park fairly close to the school, greet the staffers, get Joy's backpack sitting at the right place by the school building, take some photos, swing on the tire swing, say hi to friends and their families. Then between me & and an aide, we could help Joy file into the building with her classmates, put her stuff in her locker, and accompany her through the first couple of minutes of class time. Then I'd give her a kiss and go unwind at the parents' coffee break in the library, then head off to work -- while Joy would begin life in her new classroom, heavily supported but included as the class community-building process began.

I'd set the bar way too high.

We had parking problems. The playground was noisy and overwhelming, and Joy got upset. Began to build a reputation right away for kicking other kids. The classes got lined up late, and we escaped into the building ahead of them with her special ed teacher. But we couldn't stay in the classroom, because the morning snacks were all laid out on plates with a nametag for each kid's place. The teacher and I had talked about whether this would be a problem, I over-optimistically had said to go ahead and try his usual way, and he'd kindly set out the animal crackers we'd contributed so Joy would be sure to like the first day's snack. She liked it all right -- wanted to eat immediately. Ramped up the upset when she couldn't. We had to exit the classroom and go to the special ed teacher's office/playspace to start the day.

As we were trying to get Joy calmed down, she whacked me in the nose. And I started bawling. Could not stop. Haven't been in this bad a shape since one wretched incident not long after she was diagnosed (will have to tell you all about that one sometime). Just as I'd start to get a handle on myself, I'd hear the other kids in the class singing happily together, or Joy would pull a self-injury attempt, and I'd start up again.

I probably should have left sooner than I did, but I was there long enough that Joy actually did get calmed down and was sharing some nice moments with the spec. ed teacher. I guess I still hadn't ditched the expectations, because I then ventured to say that it might be nice if Joy could at least share snack with the class. So we went out to check things out.

Alas, they were not yet ready to eat snack. And the classroom teacher -- not having seen Joy come in -- had marked her absent and had to go change the designation. And we couldn't deny Joy the snack at that point, so she inhaled her crackers, demanded more (because since nobody else was eating, there were the rest of those full plates), and got all wound up again when she couldn't have more. Back to the pull-out room she went. And I lit out of the building with a swollen face and the ugly-cry just welling up all over, and called in sick to work.

That's our victory, there. If I'd gone in with the right set of expectations and all.