Friday, August 28, 2009

My Brain is SO Full.

The past two days have been amazing.

Those who have been following the continuing saga here will know that just a few short weeks ago, I learned about an exciting program at the university here. It's an interdisciplinary leadership training program, funded by the federal Maternal & Child Health Bureau, going by the acronym LEND, which stands for Leadership Education in Neurodevelopmental Disabilities. Turns out there's a whole network of these LEND programs. The point of the program is to catch up-and-comers as they're training for professions working with people with neurodevelopmental disabilities. Our group of 27 includes occupational therapy, speech therapy, physical therapy, public health, audiology, genetic counseling, nutrition, social work, psychology, and "family support" (parents and other family members). These people work together with the immense resources of the university's center for neurodevelopmental disabilities, devouring the smorgasbord of content, linking up with experts, pursuing leadership goals and projects and advocacy, being mentored by families in the community.

I am stunned that I am to be one of these leaders. But oh, how right it feels.

It's very encouraging to see what future leaders (guess I should say "we," huh?) are being taught. The very first slide of the first presentation of the two-day orientation started out with a series of photos -- the world, our continent, our state, our city, the university, our center's buildings. The point was: we're starting here... to change the world!

Here's a mantra worth remembering: Family-centered, community-based, culturally-competent, co-ordinated care. (How many of us have that, blogfriends? Who do we see in our communities who doesn't have that? What would it take to make that ideal a reality?)

We got a whirlwind overview of some federal disability-legislation highlights in the past 40-plus years, together with the observation that many big changes had their roots in parents seeking better lives for their kids...

We were given a case history of a family who might come to the center for a diagnosis, and met in groups with professionals from all our different disciplines who spoke briefly about their field and what their field might be able to bring to the diagnostic process and the interdisciplinary team that might work with this family...

I'm in a much better place for taking advantage of conversations than I was in my library-grad-school days. Back then I was mighty shy. Quiet. Not the one hobnobbing with the faculty, or even my fellow-students like I might have. Well. The "me" of the early 90s would hardly recognize the woman who was doing so much conversing during the breaks that there was barely time to eat!

Just one example of my high-powered classmates in this endeavor -- struck up a conversation with a gal sitting next to me in a presentation, established that she's going to be on my interdisciplinary team (autism-focused, woohoo!). Her field is public health, she's very interested in policy and advocacy, and she's actually been sitting in on the meetings with the Insurance Commissioner's office that's hashing out the rules for how Wisconsin's new autism insurance legislation will be put into practice! Is that an awesome inside source, or what?!

The last half of Thursday's orientation was to the center itself, the entity within the university that brings the focus and the education and the research to neurodevelopmental disabilities. We got a high-powered overview and then a tour of various research labs. My group's last stop of the day was in a first-floor room with a foot-and-a-half thick concrete door, that held a proton-accelerator with which that particular brain-imaging lab made its own radioisotopes for use with PET scans. Good grief. Me and my best buddy the proton accelerator!!!

My brain is so full.

Yesterday afternoon had another powerful component though, that spoke to another part of me.

First was the introduction to the center. I hadn't known this, but the entity has the imprint of the Kennedy family all over it. The initial funding came from Joseph Kennedy Jr.'s foundation. The presentation included a telegram from President Kennedy, congratulating the fledgling institution and confirming that Senator Edward Kennedy and Eunice Kennedy Shriver would be attending the opening gala... Oh, how they will be missed! And. The telegram was dated November 20, 1963. Just a couple of days before John F. Kennedy went to Dallas. Oh my.

And then. There were images in the presentation of a sweet girl who used to be in Joy's daycare, who later went to the daycare at this university center. An inspiring child and family... she has proved nay-sayers wrong again and again about her challenges.

Then there was a panel presentation with parents and also a high-school girl who has disabilities herself. The young lady stole the show. Speaking was not the easiest thing for her... she had a timed PowerPoint presentation full of lovely photos with short captions and was having trouble reading the captions before the thing switched to the next photo. After she started over several times and was getting visibly frustrated, someone came up to try and help her. She shooed the adult away, and eventually made it work herself!! She and her sister run a jewelry business together, and she enthusiastically sold us her wares afterwards during the break... gonna wear my new earrings at next Friday's seminar...

Here's a quote from one of the parents, who has a son with autism and a typically-developing daughter. "When my daughter said her first word, it was wonderful. When my son said his first word, it was heaven."

I'm tearing up just typing this. You can bet I was weeping during that panel.

Oh yes, my brain is full. So is my heart.

Tuesday, August 25, 2009

Random Tuesday Thoughts

It's been a while... the randomness has been building up... it's time for another edition of Random Tuesday Thoughts!

  • What a beautiful morning for a pre-dawn run! I am back to being able to slow-jog a full 5K. Emphasis on the slow.

  • JoyDad is running too. I think the last time we were both doing the running thing was back during my fire-eating, bridge-jumping grad-school days. Except that now we have to tag-team. Can't leave the sleeping kids alone in the house and all.

  • Hey, maybe these ARE my fire-eating, bridge-jumping grad-school days again. Y'think?

  • One week from today, Rose goes back to school -- as a second grader. Woo hoo!

  • Tomorrow, I go to my first day of orientation for my leadership training program. Woo hoo times two!

  • It took me three tries to pass the Emergency Procedures and Infection Control test that followed the pre-orientation online training module I took this weekend. I am quite certain that I will never need to know that Security personnel, and not the fire department, are responsible for fire-watch when the sprinkler systems go offline in the university health-care buildings. But now you know too. Just in case.

  • Speaking of sprinkler systems -- we're working with Joy on drinking from an open cup. She likes to put her hand into it to play with the water, and even when she's using it properly, she doesn't always pay enough attention to get the cup put back safely down. She did great the other day at snack with her barista, though, who commented afterward, "That was some impressive drinking -- and I mean that in a non-undergraduate sort of way!"

  • With fall-like weather and school coming on, I sorted clothes for the girls this weekend. Joy has grown into her sister's old 5Ts. There's a particularly cute dress I pulled out for her... checked the tag... yep, 5T, good deal... and then I saw the label name. SPEECHLESS GIRLS. Must have been made for her!

  • Except that Rose wore the dress in her day. And on the speech front, my girls are like matter and anti-matter.

  • Except that I had them on the same tire-swing last night. And it didn't cause a universe-ending, matter/anti-matter collision. I swung 'em high, totally whipped that swing in circles. The grins were immense.

  • Both my ladies continue to be loving the Food Network Channel. Joy's favorite thing about it lately appears to be the logo-bubble image on the lower right of the screen. She keeps trying to pop it.

  • Speaking of bubbles. Must... go... shower. See ya!

Saturday, August 22, 2009

God's Children

I made a comment on another blog this past week that has continued to rattle around in my head, and be applicable to other conversations I've had. It wants to be its own post. So here it is:

It is not given to any of us to MAKE our children be anything.
They are who they are.
All we can do is our best.

There's a beautiful song by Sweet Honey in the Rock that sets to music some of the words from Kahlil Gibran's poem "On Children" (from his book The Prophet.)

Here's a YouTube video of the song as performed by an unidentified young women's trio:

Here is the original text:
Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you...


Tuesday, August 18, 2009

We Can Fly, Poolside Edition

The girls and I dragged JoyDad to the pool Saturday evening, lingering cough and all, so that we got at least one full-family swim into this waning summer.

Did we ever fly! Look at Joy jump:

Joy jumps into the pool
... and jump...

Joy jumps into the pool again
... and jump with Rose...

Joy and Rose jump into the pool
... and jump with Rose some more!

Joy and Rose jump into the pool again
I loved getting to take some photos, but even more I loved an interaction I had with another mom while I was having Joy jump to me, and climb out and jump again, and climb and jump again. No hand-holding needed, no running... Well, there was another little guy almost her height, doing the same thing at the poolside a few feet over. After a few rounds his mom turned to me and commented what a good example my daughter was for her son, what positive peer pressure, he's never been willing to jump like this before! Then she asked me how old my daughter was, I told her (5), and asked how old her son was (4 1/2), and we talked a bit about how tall he was for his age, and how tall his little 2-year-old brother was for his age, but little brother was having something of a fuss and they might have to cut the evening short. All the while our kiddos were doing the jump/climb cycle over and over.

My daughter was a good example! To her son!! Full stop, no qualifications, no watering down, just a good example!!!

With most interactions like this, something will happen that will lead to my feeling the need to do some gentle commenting or educating about Joy's developmental issues. Like, the other parent will ask Joy how old she is, or what's her name, and of course get no answer. And I'll say something like "She's a lady of few words but many jumps! I bet, though, she'd give you a high-five if you asked..." or something like that, which often leads to questions that circle around what's-up-with-the-lack-of-language. This time? No such detour. Just a short cheerful conversation about pool-jumping and positive peer pressure.

That felt almost as good as the fact that Joy did not even look like she was considering running the other direction instead of jumping in.

Oh, and I got to fly too. Down the huge long twisty waterslide, bullet-like, lying down with my arms crossed tight. Wheee! Thanks for coming to the pool, JoyDad -- I don't get to waterslide when it's just me on duty! What a lovely evening.

Sunday, August 16, 2009

Side Effects are Generally Mild

"Side effects are generally mild and may include..."

How many times have you heard those words, or something like unto them, on a TV ad?

Of course, nobody expects to be the one to get the side effects. I sometimes talk myself out of expecting them even when the chances of side effects are high.

Rhemashope posted recently about the difficult decisions they're facing about epilepsy meds for Rhema -- difficult in large part because of side effects and dependency issues. Mama Edge has posted repeatedly about meds and her guys. Same with Niksmom: poor Nik has had some harrowing stuff around his meds. And these are but a few examples.

Over here, we've had a nice run of stability with Joy's epilepsy meds. It makes one forget how rough it can be to start a new one, or a new combo, and try to track what is working and what is side-effect and what is just the quotidian sliding of switches on her mixer board. Once she's been seizure-free a full year (which, Lord willin' and the creek don' rise, comes up in less than a month), our neurologist wants to talk with us about reducing medication levels. Yipe. Yipe. Yipe. That's change I think I'm going to have trouble believing in...

But that's not actually exactly upon us yet. So why am I writing all this now?

Well, JoyDad had a little adventure this past week. He started on a new medication, prescribed but also available over the counter (OTC), where "side effects are generally mild." You basically don't expect big problems when you take it.

The night after he started taking the stuff, he got a fever & chills, coughing, shortness of breath, had an awful night. In the morning he called the whoever was on-call at his clinic (weekend, of course), only to be told something vague, probably ought to stop taking the medication just in case and call the doctor on Monday. He stopped the meds, started feeling better, didn't actually miss any work, forgot to make the call, convinced himself that he'd been on the wrong end of coincidence and a virus, and re-started the medication.

This landed him in the emergency room Tuesday evening, tight-chestedly gasping for breath and coughing up things one hadn't oughtta be coughing up.

Fortunately he's OK, treated & released that evening, though he hasn't entirely shaken the cough yet. We're intensely grateful to the retired-nurse neighbor who dropped everything on a moment's notice and gave him a ride to the hospital, so I didn't have to cancel a barista and drag the kids along for the emergency room experience!

The drug in question? Prilosec. Common OTC antacid.

Be careful out there, folks, any time you or your kiddo starts some new drug, prescription or OTC or herbal supplement or whatever. Side effects may be uncommon. But with most meds -- they're entirely possible, and you just might be the one to land on the wrong side of the statistics.

Thursday, August 13, 2009

Here We Go!

Finally got the news late this afternoon -- I got into the program!

Eating Fire
Starting in just 2 weeks, I'll be starting a one-year leadership-training and interdisciplinary study program, as a parent of a child with special needs, at a prestigious university center for developmental disabilities.

Leap of Faith
I even have preliminary arrangements in place for a babysitter to help shake free the hours that I'll need to get this extra set of spinning plates into motion.

Flying with Uncle Schnirelmann

Tuesday, August 11, 2009

Positive Stories

Last night we had a team meeting at our house, one of those delightful gatherings that gets all (or almost all) of Joy's baristas (intensive autism line therapists) in one place at one time, together with me & JoyDad & Lynda the Wonder Woman daycare lady.

These are remarkably productive meetings when we keep them on track. The biggest thing that threatens to derail them occasionally is that everybody gets too involved in the very first agenda item...

The first agenda item is positive stories.

I love starting meetings this way, and I love the fact that people have SO many positive Joy-stories to tell, that it threatens to take up too much of the meeting sometimes!

Last night's positive stories included:
  • Joy ate an entire helping of cut-up spaghetti & red sauce -- with her fork. With almost no guidance.

  • When one of her baristas was playing pillow-squish game with her, and saying a big ol' "Squish!" each time the pillow came down, Joy several times echoed the unusual sound "KW".

  • At daycare, Joy was in her chair at the table playing with a puzzle, something that's usually not a big turn-on for her. Another child decided to be "helpful" and came over to take over, pulling pieces out of Joy's hand and putting them in the puzzle. And Joy, instead of checking out on the interaction, got mad, tried to hold on to the pieces, even succeeded in getting some back!

  • Joy imitated monkey-noises, "oo-ahh-ahh-ahh".

  • The "high-five" that we've worked into Joy's greeting and bye-bye routines has caught on like wildfire. It's such a charming way that she can interact that feels "normal" to people, and they respond with such delight. She high-fived the sheriff's deputy who came to change her Project Lifesaver battery, and a whole bunch of folks at church. Plus she high-fives Rose, who is a model of patience in holding her hand at the ready and waiting for Joy to come through with that high-five.

Once we've got a good foundation of positive stories to build on, it's ever so much easier to bring out the challenges, like how do we deal with Joy's grass-pulling and rotten-apple-eating in the yard? (we're going to try to provide stretchy-sequin bands, which have helped at daycare) or how do we deal when she's pingpong-ing around and won't slow down long enough to interact (sometimes it's calming to get her sitting in the high-chair, notched down to its lowest setting near the floor.)

Positive stories. Didn't I just mention recently how much I like them?

P.S. Here are some positive stories from me. This morning I went running again (OK, alternating walk with slow-jog) for the first time since I broke my toe last month. It felt fine. And, I interviewed yesterday for the university program I was talking about the other day, that would take my plate-spinning to a whole 'nother level. I don't think I've ever been so relaxed and confident in an interview before. The program feels RIGHT for me. Now the committee just has to agree! I should find out Thursday which way the decision tips.

Thursday, August 6, 2009

Favorites (Post Number 200)

Picking the top posts from a year-plus worth of Elvis Sightings is an interesting exercise.

There are a couple of different possible metrics to use. We have, of course, the nominated favorites, what we might call "Readers' Choice." Then we have posts with the most comments, posts that actually made things happen in the real world, posts that get the most hits. And then (since I'm doing the writing, hee hee) we have my own favorites.

So here we go!

There were four posts that tied for the most comments, with 16 comments each:

As far as posts that make things happen, I guess we don't always know what people do with our words after we put them out there. The action isn't always in the comments, either. My Nov. 08 post Complexity, which quoted and reflected on Tracy Kidder's book Mountains Beyond Mountains, got only one comment but inspired a friend to organize a discussion-group around the book at our congregation's annual winter retreat. My March 09 post ABLE Accounts and "A Bad Place" about the ABLE Accounts Act of 2009 generated some communication with legislators. I also hope that my product reviews have been useful; I know that I've gotten wonderful feedback on both situations and products when I've solicited advice.

The most-frequently-viewed posts, due primarily to Google image hits, are the Stunning Company one (between Tyra Banks, Natalie Porter, Demi Moore, and Joy, it's Demi who gets the most searches) and my 5th post ever, on Linear Nevus Sebaceous Syndrome. The LNSS post also generated a contact that is this close to making a substantial real-world contribution. I will let you know when the project goes live!

Then we have the nominated favorites. I suppose it's a good thing that some commenters couldn't limit themselves to one...

But the Number One nominee (several enthusiastic votes), and also a personal favorite of mine, to which I have referred again and again, the acrobatic metaphor for how I generally live my life, is of course: Spin, Spin, Spin. The JoyFamily spinning plate act has no need to go on tour -- this blog invites you all right into the midst of it.

Runners-up for my personal favorites include:

Hmmm. Guess I went a few over ten, huh? Oh well. Who sets the rules around here, anyway?

Wednesday, August 5, 2009

On the Edge (of 200 and otherwise)

First off, I mis-led you in my previous post. As I was looking through past posts in search of the top ten, I discovered a duplicate draft post that was being counted in my total. Once I deleted it, I was down to 198. This post is 199. Next one will be 200. So, we're still on the edge of 200. Ooops. The good news is, there's still time to nominate a favorite post for inclusion in the top ten!

Also on the edge (and I am obviously brazenly stealing this edge-concept) is what's up with me for this next year. I have the potential opportunity to take a fantastic one-year university program, as a parent of a child with special needs, that focuses on special-needs systems and family services, and entails intensive mentoring and leadership training and much additional coolness. It's designed to be about a 10-hour commitment per week. But first I have to get accepted, then I have to scrounge an extra day of childcare for Joy, then I have to re-arrange my life to accommodate this huge additional spinning plate (which right now looks like a huge serving-platter complete with Thanksgiving turkey). I'm thrilled, apprehensive, excited, busting at the seams with ideas -- wish me luck, y'all!

If that all weren't edgy enough, I've been thinking about Joy and physical edges lately. She has long been one to climb and teeter, generally scaring the wits out of whomever witnesses it. An early teetering favorite was the low windowsill in our living room (just barely visible in her somersaulting photo). One of her first occupational therapists suggested that the urge to get off-balance may be, for Joy, a way of feeling where she is in her skin, establishing where she is in space. Yikes!

These edges were much scarier when Joy was having daily seizures. You'd think we'd have been familiar faces at the local emergency room. That's not how it has worked out, though Joy's legs often have more bumps and bruises than we'd like to see. Amazingly enough, Joy seems to have developed rather a remarkable sense for how high is too high, how teetery is too teetery. Even though she scares us, her sense of the edge is actually pretty sound.

I've been seeing more and more evidence of this lately at parks this summer. She flings herself happily off of playground equipment ledges up to about 4 feet high, but avoids the edge when it's any higher. She has also been gaining confidence in climbing, not only going up standard ladders and ladder-grids, but also going up the kinds of climbers that look like string-art, with cables at odd angles, and climbing structures that are made of curves instead of straight edges. It's some pretty complex motor-planning that this girl has got going on.

Well, here we are at the edge of the school year, the edge of grade 2 for Rose, the edge of a new schedule for Joy, the edge of a new opportunity for me, the edge of 200 for the posts.