Over the weekend, on Saturday, I had the opportunity to speak to a group of parents and children with Type 1 at the PEP Mini Conference by the DRI Foundation. PEP stands for Parents Empowering Parents. This is a wonderful group because when a child is newly diagnosed, these parents reach out to the new parents and let them know that they can do the things that are going to be needed in order to help their child manage their diabetes.
I was asked to break off into a small little group with the teens and just have some sort of conversation with them. I was joined by Patti Sinkoe, M.S. We ended up talking about some of the things that may bother or frustrate them. One of the most common examples given was that they don’t like being asked “Did you test your blood sugar?”over and over and over. But, as us adults with Type 1 know, those questions will continue to be asked. We worked on providing recommendations to the parents on how they could ask that question a little better. For example, “What is your blood sugar?” because that at least implies that they trusted in you to have already tested.
Dr. Wendy Satin Rapaport, who is a clinical psychologist, was there, and damn was she great. Having a psychologist at a meeting like this is extremely helpful because people have questions, and some times people may be scared to go and see a psychologist.
Finally, at the end of the event, I was able to speak with some parents and introduce them to DSMA and DSMA Live ‘Rents talk. Hopefully we will see some of them participating on DSMA soon enough.
Nice job, Chris! Thanks for stepping out and doing that.
PEP sounds like a wonderful program. It is great to have PWD talk with both parents of CWD and those children. When my youngest was dxd at age 2 there wasn’t much support in our area. While the Austin JDRF has grown substantially and I became heavily involved at the time of my sons diagnosis the JDRF was very small and didn’t have the resources available. I remember calling the office and asking if there were ways to connect with other D families. The office staffer was happy to put my name and phone number on a board to share if other families called in but there wasn’t a group or anyway to connect. Things have changed dramatically there since 07 and I was very excited to become a mentor with the Austin JDRF when they started their mentor program. It makes a huge difference in the lives of the newly diagnosed families to have support available. Im in a new state now and the JDRF chapter here is HUGE and very well established. I am thankful for the mentor program and when I get the chance I always share the DOC and DSMA.
As far as the “Did you test?” I too have on occasion fallen into that pattern of questioning with both my cwd at times. I do prefer the “Hey what was your last blood sugar?” question and I think my kids prefer it too. I also ask them “What do you think you should do with that?” question after they test high/low. I find it empowers them and increases their independence. I also try to avoid the word “test” I use “check” instead hopefully avoiding the association between pass and fail we all have with the word ‘test’.
Im certainly glad you are out there supporting parents and cwd.