Work and Planes

I'm not sure why I look so distorted in this photo, but here I am at a grantee meeting, getting ready to participate on a parent panel discussing Project Access, an initiative to improve the access to and healthcare for children and youth with epilepsy. Before the parent panel, I gave a presentation that I've given before, titled "Reflections with the Spice Island Queen." Some of you might remember the wonderful exchange we had here on the blog with a young medical student who was considering applying for medical residency in pediatric neurology. She contacted me with a request to ask my readers what sort of doctor they wanted for their children, and when I posted her plea, you answered in droves. You can read that post and the comments here. If I could figure out how to do it, I'd give you a link to see my Power Point, but I'm not that computer or blog savvy, so if you'd like a copy, please email me and I'll share it with you!

I used that post for a presentation and have now shared it with over 100 professionals in the epilepsy world. It's a testament to the power of our community that this one exchange has inspired a whole bunch of people to not only continue their work improving the lives of children with epilepsy and their families but also helped to spread and sustain the whole concept of "family centered" care.

My trip was a whirlwind one -- barely 24 hours from Los Angeles to D.C. and back, but I caught up on New Yorkers on the plane, gazed for hours at my seat-mate's arms that were covered in the most interesting tattoos (and restrained myself from stroking his arm as it was so smooth and decorative and sexy), watched with interest when the same seat-mate pulled out a lined notebook and began to draw incredible flowers with colored pencils, went back to reading MORE Magazine (for women over 40), closed my eyes and jolted awake with my mouth hanging open, mortified that I had perhaps snored and the man with the beautiful arms had perhaps heard me!, surreptitiously ate a package of cherry Twizzlers and finished a memoir on my Kindle.

I'm home now and have much to share with you about an event this Saturday in Los Angeles, but I'm going to bed, my own bed.

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!