Community Table: Finding Support As Parents + Caregivers for Diabetes
Community Table is presented by the the JDRF-Beyond Type 1 Alliance, and made possible with support from sponsors Abbott Diabetes Care, Dexcom, Lilly, Mannkind, Medtronic, Omnipod, Roche Diabetes Care, and Tandem.
During our eighth Community Table discussion, Beyond Type 1 sat down with a group of experts and community members to discuss how parents and caregivers of a person with diabetes can find support. Watch the discussion in full!
- Crystal Hall, who served as the moderator for this event, is the mother of a 4 year old daughter with Type 1 diabetes named Brooklyn, also known as “T1D Brookie” on social media.
- Julie McKinney has 4 children with T1D, who were diagnosed between the ages of 3 and 14 years old.
- Erica Taylor has 2 children with T1D, a boy who is 25 and a girl who is 12 years old.
- Tom Huxtable, who has had Type 1 for 40 years, has a son, Colin (also featured on this panel), who also has T1D.
- Colin Huxtable, Tom’s son, who has had Type 1 for 11 years, and at nearly 18, is currently working to earn his pilot’s license.
- Nicole Schneider, who has had T1D for 25 years, is a Nurse Practitioner at the Barbara Davis Center and works with people with diabetes to transition from pediatric to adult care.
Partial transcript of the conversation below, edited for content + clarity.
What do you remember about your diagnosis?
Colin: I remember when I first got diagnosed, I had to learn so many new things and figure out which resources worked the best and what lifestyle worked the best. It was a big learning curve. But in the end, it was a positive experience and it turned out to be pretty good.
I was six and I was going into first grade at a brand new school. I didn’t know anyone, I didn’t know any of the teachers or the nurses, so my mom sat in my first grade classroom for 3 months. We had to train a lot of the teachers, because most of them didn’t know about diabetes. All my friends would ask me questions and every year I would make a presentation for my class and tell them about diabetes and what to do in an emergency if that happened. I would write letters to my teachers and we would make sure that everyone knew what to do.
As I got into middle school and high school, I started managing diabetes more on my own, but I would still write letters to teachers and make sure that my friends knew what to do, because I hung out with them a lot. Also I had to train all my after-school facilitators too, like my theater director.
What type of technology do you and your loved ones use?
Tom: Both Colin and I are on the same system. When Colin was diagnosed, Dexcom had only been out for about a year. So when he got diagnosed I called the rep in Denver and said, “Hey, we’re interested in trying this. I want to try it and see if I like it. If I like it, I want to see if I can get my son on it.”
When I first got my Dexcom, and after the 2 hour warmup, I broke down when that thing turned on. I was like, “I’ve been testing my blood sugar for 28 years, my fingers were just numb and all of a sudden I could see where my blood sugar was at all times.” It was cool and emotional. I did it for a few weeks and then we put Colin on right away, the CGM has been a game changer.
How can we have supportive and constructive conversations about diabetes?
Crystal: Focus on being positive. When children or young patients hear negative things, that sticks with them forever. You never forget a lot of those conversations that you hear when you’re younger, whether it be from your parents or from a medical professional.
Erica: When my oldest son was diagnosed we didn’t tell a lot of people because it was something that we dealt with, it was our new normal. But when my second child came around, was diagnosed, I became more vocal. I sought out more help than I did initially. I recognized that not only was I concerned about their highs and lows and not getting it right, the rest of my family were scared as well.
I searched for a diabetes family support group on Facebook, but I couldn’t find any active pages. I talked to someone from the Barbara Davis Center and that’s how I got connected with Tom and Colin Huxtable who connected me to another group. By going to the support group I felt more supported and it also gave my children an opportunity to interact and speak with people who were living with Type 1 diabetes. With that being said, use the resources around you, and lean on other people who are dealing with it.
What tips do you have for parents who are trying to take care of themselves?
Tom: For the newly diagnosed, know that through good care and some work your child is going to live a normal life. They’re always going to have their challenges, everybody in life has challenges, and diabetes just happens to be your child’s challenge or your challenge.
Through the support group, it made parents realize that things are going to be fine. In the beginning it’s hard and it’s overwhelming and it’s new and you’re learning. But it will all settle down and remember to not be so hard on yourselves. I put in my notes here, “Don’t be so hard on yourself.” I was in the beginning. I took it really personally. Now, this kid [gestures to Colin] is a couple of weeks away from getting his private pilot’s license, he he wants to fly commercially. Nothing’s going to stop him from doing anything he wants. We backpack. We camp all the time. We mountain bike all over the place. Nothing will stop your kids.
Julie: Diabetes does not stop your children from doing anything. If anything it’s more hindering on us as parents than it is on kids. Especially to your kids who get this disease when they’re young, like my twins did at ages 3 and 4. Ashley and Emily are going for the 2024 Olympics and Bicycle Motocross they haven’t let diabetes stop them at all either.
To be honest, I don’t think that anybody should get this disease or I would never wish it on anybody. But I will tell you that I think that my children who have Type 1 diabetes are more caring, loving, understanding, compassionate people than most children I meet that don’t have something like this. The character building that comes from this type of thing is priceless. It builds something in your kids that you couldn’t have taught.