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!

In my spare time, while lounging,

I helped to produce a webinar that was recorded in January with Project Access and The Epilepsy Foundation of America. Using Technology to Communicate with Your Developmentally Disabled Child ** features my friend and colleague, Jennifer Bertram (the mother of a child with both autism and epilepsy) and Cindy Cottier, an extraordinary speech pathologist who specializes in augmentative communication technology here in southern California. Jennifer and I share our personal stories and successes with Cindy, who provides an in-depth view of various communication tools and explains how the iPad, in particular, is used as a communication tool for children and youth with developmental disabilities. There are wonderful resource pages and tips on portability and hardware. You can listen to the pre-recorded webinar by clicking this link (there is no need to pre-register, and it's free!):

http://connect.epilepsyfoundation.org/p32641212/http://connect.epilepsyfoundation.org/p32641212/

On February 14th, we will host a live Question and Answer session -- Cindy, Jennifer and yours truly. The Q&A is also free, but you do have to pre-register. Here's the link to do so with information:

 http://ncpawebinar2.eventbrite.com/

Finally, Julia Roberts (not THE Julia Roberts, but a far more interesting one!) has been kind enough to help spread the news on her wonderful website SupportforSpecialNeeds.com . You can access the webinar and the Q&A links there as well!

Finally, please share this information with as many people as you can who might benefit. I would so appreciate that -- and will allow you some time on my couch with homemade bonbons if you do so.

** I apologize for the less than stellar sound quality of the recording. Project Access is working on improving the link, and hopefully it will be soon.

Epilepsy and My Child

Looking forward to the webinar on December 13th, I wrote a brief essay in this month's Epilepsy and My Child Newsletter. You can read it by clicking HERE and scrolling down. My piece is titled Adolescence: The Developmental Milestone That Came on Time. The other articles are of interest, too, and we hope you'll register for the free webinar!

What I've Been Working On --

Forgive the repetitious posting of this flyer, but I am hoping to encourage many people to sign up for the December 13th webinar that I and my friend and colleague Jennifer have been working on along with Project Access and the Epilepsy Foundation. The webinar is FREE; you only need to register by clicking on the link in the flyer. Also, the webinar will be relevant to all children with special healthcare needs facing puberty and adolescence, so I'd appreciate you sending the information to your friends or anyone else who might be interested.

I hope to "see" you there!

Strategies for Success:

Communicating with Your Developmentally Disabled Child

During Adolescence and Puberty

Parents of children with severe epilepsies not only deal with the issues associated with epilepsy as a condition, but they may also face challenges with their child being unable to communicate verbally or having cognitive and developmental issues. Despite having a severe form of epilepsy, children continue to grow and will enter puberty and adolescence as any child would. Parents may be unsure how they are going to handle this stage of their children’s lives. Two parents, Elizabeth and Jennifer, will share their stories and our certified expert, Courtney, will provide helpful information for parents and youth on ways to communicate effectively during the pubescent stages and adolescent years. Also, the latest addition is Dr. Janelle Wagner, a psychologist who will provide information and data on the effects of epilepsy and relative conditions in adolescents and young adults.

Moderator: Elizabeth Aquino, Parent

Presenter: Jennifer Bertram, Parent

Featured Speaker: Courtney Kowalczyk, M.Ed.

Scientific Expert Dr. Janelle Wagner, PhD (Just Added)

Some topics that will be addressed:

Communicating with your child about his/her body changes

Social appropriateness and private behaviors

Assisting your pre-teen/teen with proper hygiene and care

.

If you are a parent who has questions or concerns about your child, please join us for this very informative webinar.

Link to register: http://ncpawebinar1.eventbrite.com/   

At the end of the webinar there will be an extended live Q & A session on the Epilepsy Foundation's eCommunities website.

Have questions? Submit your questions to the Forum before the webinar. Selected questions will be answered during the live event.

The information presented during this webinar is not intended as a substitute for medical advice. Please consult your physician about all clinical care and treatment decisions.

Hosted by the National Center for Project Access of the Epilepsy Foundation. This event is funded by the Health Re-sources and Services Administration’s Maternal and Child Health Bureau under grant # U23MC08582.

What I've Been Working On -- Please Spread Around and Attend

I work part time for Project Access with my friend and colleague Jennifer Bertram. We've been busy organizing and working on the following webinar. I would really appreciate you spreading the word to all those you know who have children and adolescents with developmental disabilities. And if you don't, but just want to hear how goofy I sound, register (it's FREE!) and listen!

December 13, 2011 1:30PM - 3:00PM pm EST

Strategies for Success:

Communicating with Your Developmentally Disabled Child

During Adolescence and Puberty

Parents of children with severe epilepsies not only deal with the issues associated with epilepsy as a condition, but they may also face challenges with their child being unable to communicate verbally or having cognitive and developmental issues. Despite having a severe form of epilepsy, children continue to grow and will enter puberty and adolescence as any child would. Parents may be unsure how they are going to handle this stage of their children’s lives. Two parents, Elizabeth and Jennifer, will share their stories and our certified expert, Courtney, will provide helpful information for parents and youth on ways to communicate effectively during the pubescent stages and adolescent years. Also, the latest addition is Dr. Janelle Wagner, a psychologist who will provide information and data on the effects of epilepsy and relative conditions in adolescents and young adults.

Moderator: Elizabeth Aquino, Parent

Presenter: Jennifer Bertram, Parent

Featured Speaker: Courtney Kowalczyk, M.Ed.

Scientific Expert Dr. Janelle Wagner, PhD (Just Added)

Some topics that will be addressed: 

Communicating with your child about his/her body changes

Social appropriateness and private behaviors

 Assisting your pre-teen/teen with proper hygiene and care

.

If you are a parent who has questions or concerns about your child, please join us for this very informative webinar.

Link to register

At the end of the webinar there will be an extended live Q & A session on the Epilepsy Founda-tion's eCommunities website.

Have questions? Submit your questions to the Forum before the webinar. Selected questions will be answered during the live event.

The information presented during this webinar is not intended as a substitute for medical advice. Please consult your physician about all clinical care and treatment decisions.

Hosted by the National Center for Project Access of the Epilepsy Foundation. This event is funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau under grant # U23MC08582.