Monday, September 26, 2011

Wide Open Spaces

The pace of my blogging continues to gravitate toward a more widely-spaced output. The to-do list feels long. I keep hoping that I'll move into a good rhythm with the school year -- maybe I just haven't gotten there yet.

Joy got a brand-new wide-open space herself a week ago at school... she's now missing a front-tooth! It's been quite a while since the bottom two came out, almost a year now, so I guess we're due. This one came home a day later than it actually came out. In fact, the news came a day late too! The tooth had disappeared right at the end of a rougher-than-normal day, after Joy's school staff had already filled out her daily log, and it got missed in the brief verbal "how was her day" as well. Her SEA had not been back in the building a minute before I noticed that gaping new hole!

I figured she had maybe swallowed the tooth, and was giving her staff enough of a run for their money that it had maybe gone unnoticed, seeing as how she wouldn't have made a fuss about it... but Tuesday morning we got a belated tooth-loss report as soon as we came in the school door, words-tumbling-over-one-another apologetic! And then by the time I picked her up Tuesday afternoon, the missing tooth had been found as well, and was stowed in a little plastic treasure chest in her backpack.

Doesn't that look like a first-grade smile, though?

The other wide-open space we've been dealing with lately is one that dates back to the beginning of the summer, when we starting having another bout of hair-pulling-out. Over the course of a week or two, Joy managed to create a noticeable totally-bald patch along her nevus-removal scar, even after I gave her a short haircut to make the hair harder to grab. This time I opted not to go the full buzz-cut route, planning to even things up through future haircuts.

But before we got as far as haircutting, another space-within-a-space opened up. I think it might have started as a mosquito bite right on the scalp-scar, that Joy scratched open the way she generally does with mosquito bites. Long after the summer bites on her legs healed, the one on her head was still open. For a while she semeed to be scratching it for stimmy-delight, then it turned into a self-injury frustration lash-out thing. (What, I can't get through that forbidden door? Well, SCRATCH MY SCAR!)

Scratch after scratch, the start of the school year was approaching and the wound was getting bigger instead of smaller. Complicating the matter was our long-standing experience that band-aids only draw further attention to any boo-boo, by encouraging picking. So we knew that putting on a band-aid would just make things worse.

Except -- the other thing that we might have remembered is that Joy's mixer-board switches do tend to flip between settings, from time to time. After a few days of school and a Labor Day weekend full of scab-scratches, I finally decided that trying a band-aid couldn't be any worse.

She left it on for a couple of days. Long enough to begin a cycle of some healing... it's been three steps forward, two steps back since then, including a resumption of unwillingness to wear the band-aid, but we've been making progress. Perhaps by the time the hair grows back, the wide-open space will have closed again for good!

Thursday, September 15, 2011

Taking Action on CARA

UPDATE 9/15: I just got the following e-mail from Autism Votes:
We have learned that House Majority Leader Cantor has affirmed his pledge not to allow the federal commitment for autism to expire by supporting the Combating Autism Reauthorization Act (CARA) of 2011 and allowing the bill to go to the House floor for a vote early next week. Thank you so much for all your hard work the last few days in sending him emails and making phone calls.

I've got several blogposts backed up in a jumble in my mind, but I'm going to hit an urgent advocacy-alert one first.

The Combating Autism Reauthorization Act of 2011 (CARA) needs our help to pass by September 30th.

CARA is a 3-year re-authorization of federal funding that's been in place since 2006, which was first passed during the GW Bush administration. The funding focuses on expanding research and coordination through the National Institutes of Health, increasing awareness and surveillance at the Centers for Disease Control & Prevention, and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families.

For me on a very concrete level, growing from how Joy has propelled me into autism advocacy -- this is what funded my LEND training two years ago, an amazing program that Elvis Sightings readers heard about at length as my LEND year progressed. Via a state implementation grant, it also made possible the summer work that I did in 2010 on a recently-released publication called Finding Your Way: A Navigation Guide for Families Who Have Children and Youth With Special Health Care Needs and Disabilities.

On a macro level, this funding has helped with great strides in research and education and awareness all across the country. We can't let it stop now!

The key legislator right now is House Majority Leader Eric Cantor, who was a co-sponsor of the original 2006 act and must bring CARA to the House floor for a vote in order for it to pass. UPDATE: He pledged to do it!! Can you give his office a quick call? Here's the phone info & a short script:

Call House Majority Leader Eric Cantor and politely ask him to allow the Combating Autism Reauthorization Act (H.R. 2005) to go to the floor for a vote. CALL HERE: 202-225-4000

What to say:
"Hi. My name is [name] and I am calling to ask Leader Cantor to allow HR 2005, The Combating Autism Reauthorization Act, to go to the House floor for a vote. The funding is crucial for research and awareness on autism, and support for children with autism and their families. Thank you."


If you've got another couple of minutes, here are some quick next-steps:

1) Follow up the call to Cantor's office with an e-mail -- this link will help generate one for you! Here's a new link to communicate a thank-you message!

2) E-mail your own Senators & Representative: if you follow this link to the Autism Society "Vote 4 Autism" page, you can read more about CARA and then click on the "Take Action" button to send messages to your legislators.

Thank you so much, in advance!

P.S. The initiative is crucial but the title of the law is... unfortunate. I like the acronym CARA much better, meaning "dear" or "beloved" in several languages.

Friday, September 2, 2011

Go Jump in a Lake!

I guess if one's child is going to be driven by an unspoken imperative to "Go jump in a lake!" it's good to have a beautiful lake to jump into.

The JoyFamily returned on Monday from another long-weekend jaunt to the family cabins in the Upper Peninsula of Michigan. I'm pleased to report that our trip home was nicely uneventful, in contrast to our Memorial Day mudbath. The vacation itself was free of marauding ruffed grouse, and nary an exploding shower pipe was to be found.

The big novelty of the trip was the company of AuntieS, who hadn't been up to the lake in 3 decades. It was such a treat to have her there, I didn't even mind "letting" her win a round of dice the last night we were there... Besides, she took pictures! (Photos below are courtesy of AuntieS).

For Joy, the top-priority draw this visit was the lake itself. We hadn't been in the cabin five minutes, just beginning to unload and unpack, when we suddenly heard the lake-side screen door slam and Joy was hurtling down the steep embankment toward the pier. How she kept on her feet the whole way down, I'll never know -- I'm not even sure how I managed to stay upright in pursuit. I caught up with her at the last second, just as she paused at the far end of the pier before launching herself into the drink.

In past years, we've been able to sit on the pier and play little games, or swing on the rickety metal swingset between the cabins, or hang out happily for hours on the screen-porch overlooking the lake. Not this time around. Some switch on Joy's mixer-board had assumed a new setting -- the "Go jump in a lake" setting. Being in sight of the lake without actually jumping in? Not to be considered.

Fortunately, the weather cooperated for lake-splashings every afternoon we were there. Summer is waning up north, but by afternoon the sun had always warmed up the air and the lake enough for a swim.

The first afternoon, we splashed both off the pier and with the rest of the family off the side of the pontoon boat.

The next day we learned to float tummy-down on a little inflatable life-ring toy.

The third day, Joy discovered the delight of driving her hands down into the muddy sand of the lakebed. That was so much fun, she was even willing to dunk her head under when we went into slightly deeper water, for the joy of that sloppy lakebed.

We had other fine moments as well: unusual success at going for walks down the woodland roads, and playing with ferns WITHOUT consuming them, and an unusually calm ride home.

Gorgeous weather aside, this was not really an ideal weekend to upset the Joy-routine with a trip to the lake. We've had fruit-basket-upset with our therapy staffing and schedule and location through the course of August, with changes still happening. Then our summer childcare arrangement came to an end mid-August, leaving us patching together the last two weeks. And then the crowning routine-buster -- the start of first grade, with shortened days both Thursday and Friday, and a new teacher and case manager.

Since I didn't get this written before Day 1 of school actually happened, I'll let you in on the first day's outcome -- Joy's two main special education assistants are with her again this year. The first day of first grade was not at all like the traumatic first day of kindergarten. Not without some stress of course, but overall a big relief to everyone involved. Onward to Day 2!