Our son was recently diagnosed with Perthes. We are currently staying at the Hackerman-Patz Guest House in Baltimore while Elan recuperates. This note is a follow-on to the original post and continues the conversation about what sick kids have to do with social media.
Disclaimer: if you don’t have a 10 yr old (or, think like one), some of the players mentioned here might not make sense…
Use You Tube and other outlets to grow your brand– We took our son, one week out of surgery, to see the Naked Brothers band. It was a blast. We somehow got invited backstage to party with the band. We were also pretty jazzed to meet Polly Draper, the band’s mom. You can see some of the pics here.
Opening for the Naked Bros was Savannah Outen. We know her because of Radio Disney airplay. Her song is in heavy rotation during morning drive time. Savannah introduced herself to the crowd with two words- You Tube. Turns out that her song has something like a million views on You Tube. She pumped her myspace pages several times during the show and ended by taking pics of the crowd for her online scrapbook. Our son was lucky enough to meet her backstage and get this pic, which she promptly posted to myspace.
Times are a changin’ – Doctors and their staffs, Nurses, and other health care workers routinely tell us to go online and ‘talk’ to other parents. They confirm that parents offer some of the best advice around when it comes to dealing with difficult situations. Maybe I shouldn’t have been but, I was surprised to hear top surgeons tell us that parents in similar situations can offer accurate advice. This is of course true but I was still surprised to hear it. The Doctors actually encourage you to join and participate in unfiltered discussion groups. In the groups that we participate in, parents discuss and help each other arrive at pre and post-op decisions. btw, we found and connected with our surgeon through an e-mail list.
Community building ain’t easy– Our son’s website has 2,000 visits inside of 2 weeks. Facebook and Twitter has been a great way to spread the word about both the website and guestbook. Elan’s built an e-mail list, people write when he doesn’t post to make sure all is OK, he’s already tired. Elan has added pressure that most of us don’t face with his principle, teachers and many parents looking on There’s a direct correlation between journal postings and guest book entries. When he’s having a bad day or does something unusual, 25 people will post comments.
E-mail notifications has been a great way for people to keep in touch. We also send out a weekly broadcast that summarizes the week’s posts. Elan is developing his own personality and learning how hard it is to build a community UNLESS you’re passionate about it!
You can’t control your online persona– Some of our son’s first blog sightings and postings will be about what he’s currently going through. I can already see this here and here when I Google him. Is this a bad thing? Maybe not, I’m not sure yet. One thing’s for sure though- you can’t control the archives!
Nothing beats face-to-face– Elan is the proud owner of the new Mac Book. With Skype and broadband access, he’s able to often join his schoolmates and teachers. This is important as he’ll be out of school for an extended period of time. Elan is the first student in his school to put together his own distance learning program. We were supportive but not only for the academics. As you can imagine, Elan has many friends in the 4th grade. He missed them terribly.
Being able to see them during the day is a real bonus and eliminates some of the isolation. Nothing beats face-to-face though. Online interaction is a good supplement to the real deal. We’ll be happy though when our son can once again be in the same room with his friends.