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.


Anonymous said...

(I remember LEND - from back in my faculty days.)

"oh, how right it feels" I think you are genetically predisposed for leadership. (Age of expression notwithstanding.)

I am going to greatly enjoy reading about your 'fullness' in this program - just like I enjoy reading about Joy and Rose and their Dad.

Thank you!

Anonymous said...

this program sounds like a dream. and the best part form here? we get to live it vicariously!!

datri said...

What a wonderful program. How fortunate you get to take part!