Today’s Feeding Tube Awareness Week Topic is:
Outreach: Spread the Word!
Before joining the Feeding Tube Awareness Foundation, I saw my role as a tubie parent, especially one who was quite disappointed by her introduction to the world of feeding tubes, to reach out to any new tubies in my area and/or extended social circle. I would try to keep an ear out in my local special needs groups to see if anyone was struggling with this decision, or about to go into surgery, or in the early learning phases. I knew that FTA was providing fantastic support in real time to lots of people, but I wanted to try to do in-person outreach at our local hospital with Ez as much as possible…
Ezzy and I made our good friends Ryan and his mom Karen this way. Ezzy and I visited Karen while she was in the hospital with Ryan for over three months. Ez and I sat down with Karen in the cafeteria and talked tubies: feeding methods, tools, accessories, venting, support…all sort of things. Ezzy was so proud to be a help.
I am also on the Parent Faculty at our Children’s Hospital. I have been in touch with the Center for Families and our doctors there about making tubie-friendlier policies and doing parent to medical practitioner training on tube-feeding–since the ways in which tubies are fed at home tend to be quite different than the hospital training! Nothing substantial has come of it yet…but something will soon, I’m sure.
I try to see Ezzy as a sort of a good-will ambassador of tubie-dom. When the opportunity presents itself we explain to her friends (and their parents). I find it easier with kids…they just accept it and move on…and soon their parents catch up with them!
Now that I am officially the Chief Communications Maman at the Feeding Tube Awareness Foundation, I am excited to see the way in which I do outreach shift, becoming more wide-reaching. I have a particular project I have been brought in on with FTA that will, hopefully, take my initial mission of mentoring new tubies to a new level.
Read today’s blog post at Feeding Tube Awareness by Traci Nagy, the founder of Feeding Tube Awareness! And don’t forget to find and “like” Feeding Tube Awareness on Facebook.
I think 2013 is going to be a great year for outreach!