Thinking About Older T1D Teens and College? I do.

My girls are in the middle.

That means that we have successfully navigated baby and toddler hood.  We have also learned how to jump through the never-ending-food parade of elementary school and tackle the beginning independence of middle school.  When the girls both hit double digits in ages, I knew that we had arrived squarely in the middle of childhood.

While I try to live in the moment, I can't help but marvel at how far we have come and to also, look ahead to the future, which for us, includes the 'c' word; COLLEGE.

It can be done.  I know this.  My brain tells me it is so.  People that live with t1d go off to college, have late night study sessions, oversleep in the morning and eat stale pizza daily.  And they still manage t1d.  To keep it real, I know that people that live with t1d continue to LIVE.  Yes, live.  Because sometimes as a parent, it is difficult to swallow that huge fear that the worst could happen.

And I know it could.  But I also know that with some hard work, planning and good sense of self, it won't.

Yes, I know all of this.

But how it happens, I am not sure.  We are still in the middle and haven't made it that far.

One of my ideas is to start by practicing while they are young.  We are using this summer as a potential starting point for allowing a bit more (and carefully controlled) planning to occur.  Oldest daughter has accepted a one-day-a-week babysitting job.  Youngest daughter has asked for art lessons.  Both will be in golf again.  There will also be sleepovers, parties and long days at the beach - with and without me.  Simple things but both allowing a bit more freedom and a chance to start implementing their skills of living life WITH type 1 diabetes.

Because the thing that I know most of all is that I would be doing a great disservice to my children if I didn't allow them to live BECAUSE of t1d.

 (click on this link for a great article in the Huffington Post).

Clinic Appointments for Older Kids

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.

She's Worth The Effort

Oldest Daughter and NSS Dad

On Friday, we had our quarterly A1c appointment.  It wasn't extraordinary nor was it horrible, but it was eye-opening.

With little fanfare, we went, we received our A1c results and we watched with great sadness as our oldest daughter fell apart in a puddle of tears.

Her A1c was 8.2% and for an almost 13 year-old girl that is managing as independently as one could, that number barely reflected the amazing job she has been doing.

But she is almost 13.  And she is sensitive.  She is also a high-achiever and displays typical first-born characteristics of being mature, responsible and goal oriented.  No matter how we comforted her, she was not to be consoled.

And to make matters even worse, her younger sister had an A1c of 7.5%.

An 8.2% A1c wasn't 'good-enough'.

So it hit me like a ton of bricks.  This is much the same as I felt when I was striving for perfection in our youngest daughter's blood sugar numbers.  I worked so hard to ensure that I did everything right and felt completely deflated when the A1c hovered at 8.0.

The difference?  I learned the difficult rule of type 1 diabetes being an art and not a science.  Sometimes, despite our best attempts, diabetes will not cooperate.

The other difference?  She is not your typical teenager.  This young lady WANTS to have good numbers.  She complies with her blood sugar testing and happily wears a CGM.  She just wants to hear (and see) that she is doing a good job.

Unfortunately, the A1c seems to be making her feel less than, despite all of my learning and instruction to 'let it go'.

Over the weekend, we talked about it and oldest daughter is back in good spirits.  I am once again left holding the bag of emotions and wondering how to best navigate this new world.  It is clear that she is listening, she is feeling the tug of a never-ending, imperfect disease that is difficult to manage.

In the next blog article, I will write up a few ideas that I have tossed back to the clinic to help make it better for older patients that are taking on the responsibility of type 1 diabetes management.

She's worth the effort.

The NSS Girls