When my girls were small, we could often pack a 'Bag of Fun' and plan a little picnic in the doctor's office. The girls loved those visits because each Bag of Fun offered a new treat or surprise. Often, it was just a puzzle or new coloring book but it was enough of a surprise that it was neat to play with during the one-two hour visit.
While I knew that the Bag of Fun had kept the girls busy, I didn't realize that one day they would completely grow out of it and grow into participating in our adult discussion at the clinic. I know that seems crazy, but in seven years, the girls were happy to leave the talking up to me and their dad. Somehow, I just assumed that it would be like that forever.
Well, I was wrong.
For two appointments now, our oldest daughter has not only listened intently to what we are discussing but has participated, complete with tears over what she is feeling is 'not good enough' when it comes to her A1c - which at 8.2%, is plenty fine.
In fact, it is MORE than fine. I won't bore you with the million reasons but I will share a few that stand out to me; she is safe, she is checking bg, she is taking insulin, she is measuring her food, she is growing, she is hormonal, she is on her own with school and after school activities sometimes 12 hours a day! Did I mention that she also pulls in straight-A's every quarter? Yes, I think she is doing a tremendous job! Her A1c number will never reflect all of that effort and hard work.
Which brings me back to the situation that I am in. With the Bag of Fun no longer holding magic entertainment for one of the Naturally Sweet Sisters, I think it is time to switch a bit of how we handle that appointment.
This weekend, with help and feedback from oldest daughter, we drafted an email to our clinic social worker with three suggestions.
1.) Create an on-line accessible form for older kids to fill in to discuss what they have been up to during the past few months. Why is this needed? Well, in the way that our clinic handles the A1c, kids are told what their A1c number is and then, asked a bunch of questions about what they have been doing. Unfortunately, what happens is that oldest daughter hears her A1c and then, tunes out everything else. She said, "My mind goes blank and I can't even remember what I did yesterday!". Perhaps having a written document to help take the focus off the child and onto the words would make that conversation less intimidating and more productive. It really is a lot about setting the tone and I want to make sure we keep things positive.
2.) Have the clinic provide the A1c in a written document that is casually handed out. One of my fellow T1d Mom, Dana, told me that her clinic offers a two-page handout with her daughter's A1c and an average of the clinic patients A1c in a nice graph format. She loves this because it takes the pressure of thinking that you are trying to achieve a robotic ADA guideline when the reality is, kids are kids. What is the NORM for kids? Well, with a graph like that, you could see. Our oldest daughter loved the idea and felt like it would be motivating when you are on one higher side and a pat on the back when you are on the lower side. Kind of like playing video games with your friends. Everyone wants a good score but only if it is relative to reality.
3.) At our last two appointments, with Oldest Daughter in tears, I wanted to take a breather and speak quietly to our staff without having any young ears listening. At our clinic, there is no place for kids to go other than in the waiting rooms. What we talk about it, they will hear. Which, now that I am fully aware that kids are listening, I want to have a protection option built-in. What I don't want is secrecy or the feeling that something bad is occurring if I need to speak to the Dr. So I proposed an idea... what if there was a space within the clinic where kids would be free to go to watch tv or play games for a few minutes while parents talk. It might be a softer, kinder and gentler feeling that hearing things and feeling like you did something wrong.
I also want to open this up to other parents. What would you like to see happen in your own clinic? Or if you could change anything what would it be? Or maybe tell us what works and what you love at your clinic. All feedback is appreciated.
I can't change the world but I can change how we deal with T1d and maybe, the change will catch on for others.
And just maybe, it will be better.