Growing Up With Type 1 Diabetes

How did your parents help you enjoy childhood with type 1 diabetes? 

I asked this question to my group of moms with type 1 diabetes, knowing many of them had been diagnosed at a range of ages. I found their responses to be very helpful and positive for parents out there with children with type 1 diabetes. 

My Question: 

Hey Mamas- I just had the mom of a newly diagnosed toddler write me on Instagram. She had questions that I felt were better answered by a larger group with more experience, as I was diagnosed at 14 years old, and diabetes was not there most of my childhood. But for those of you diagnosed young, how did your parents make sure you were enjoying your childhood the most? She expressed that it breaks her heart to see other children eating carefree and her child cannot do the same. I feel a group of T1D moms are probably some of the best people to ask. Do you have some words of wisdom or feedback I can share?

Their Responses:

• Now a days kids can be a lot more flexible with treat type things and party food by bolusing on their pump when they have it. I didn't have a pump as a kid, but at parties and events I would go for cake and ice cream, but knew if I had too much I would start feeling sick, so I would make sure to not go overboard. They should be able to "be a kid" within reason just remember to bolus for sugary treats!

• My mother took things to the extreme and got rid of all the candy and only ever let me have a little sugar free candy. I highly advise against this route!! As a teenager I rebelled and would go to Walgreens and buy candy and binge eat it. Now I have major complications from those few years where I thought I was showing her....😞. I highly recommend letting her child have the sweets etc. and just teaching them as they grow moderation and how to use the pump etc. to help them stay in range even when they do eat something with more sugar. Hope this helps!

• My mom actually introduced more sweets into the family because she didn’t want me to feel deprived. It’s so hard depending on the age. I was 6 when diagnosed. I agree with teaching moderation. Teaching to be prepared ahead of time at a party. It’s times like that that planning ahead is key. My mom also kept me in competitive sports with helped my control. I had started that before (learning ice skating at age 3), but she kept it up for me and it helped my A1C. Though it should be something the kid enjoys!:) I never felt my meals were not normal compared to others. 

• The parents' reaction can really impact our path. Mine never showed their fears. Kept us in all our sports and basically said, "you can and will do anything (other than go to space or be a bus driver) 🤣 My sister and I are both T1D so my parents adjusted our food for the whole family. In this world of cgm wearing, so much is less of a mystery. Once I got a pump at 18, that went out the window I could really just eat! Additionally, going to diabetic summer camp from 6-18 was life changing. Connecting to organizations that focus on parents would also help.

• My parents let me eat just like my brother and sister were eating. We just took insulin for it. She felt is she was super strict about what I ate then I’d just go hide food and eat it. Or eat crazy at friends house. I was diagnosed at age 6.
  I also went to diabetes camp and loved it.

• When I was diagnosed technology is not where it was today. I was on N and H and there was lots of sugar free food. During this time it was thought only sugar increased your BG, not carbs. So crazy how it’s changed!
  
  My mom made treats sugar free. Otherwise I really didn’t eat a ton.
  
  With pumps now she could really have anything and just make sure she boluses for them. 

• My moms life completely changed, as did mine, after going to diabetes camp. She got the support and knowledge she needed and I got to see other kids and adults who were like me I dont know where you're located, but www.dyf.org is an amazing organization in CA. I worked for them when I was older and had campers come from as far as Finland!

•  I was diagnosed at 12 but have taken care of a number of toddlers and what I experienced was most people definitely made an effort to eat healthier as a family, all together and there weren’t lots of sweets in the home but that when they were with others they are just like everyone else. And yes with the cgm and the pump that most kids are on now it never seemed to be a big deal. Also finding that many of them know atleast one other child at their school that has diabetes and yes can’t say enough about camps.

• There is amazing group of parents of people with T1D in this group https://www.facebook.com/groups/FriendsForLifeOrlando/
  
  The group name is misleading. It’s not just orlando people. A large organization called Children With Diabetes puts together conferences all around and their largest one is called Friends For Life Orlando. Around 4000 people attend every year. Full disclosure I volunteered with them for 10 years and been working with them for a year and can’t say enough good things about the community.

•  I was diagnosed at age 2. It’s more of the parents reaction that effects the child than their peers. My mom would cry all the time and felt sorry for me and that made me feel different from other kids. After the divorce my father raised me and he didn’t treat me different than my 4 other siblings, granted he was a fireman and health nut naturally we always ate clean. His verbal encouragements that I can do everything and just need to take a little extra care is what made me more resilient, when we are diagnosed young we don’t know the difference. I didn’t know taking shots was odd and I don’t know carb counting was abnormal.
  I did it daily so I thought that was life. DYF camp is what helped my parents and siblings cope with not making me feel different from others. Having daily verbal encouragement and positive attitudes from parents is the key (parents should never say that’s a bad number) it brings guilt and shame.

• I agree with what the other Mommas said... Camps are a huge deal, I was diagnosed at 4, started attending day camps at 5, and ended up becoming the camp director! The organization I work for is California Diabetes Association (diabetesca.org), we have an awesome program.
  My parents created a lot of structure, I was on the exchange system, and we really stuck very closely to a schedule, but they never let me think I couldn't do anything I wanted to do, they always figured out a way to make it work. They also figured out which snacks and junk food my brother liked that I didn't like, and loaded him up with that, so neither one of us felt deprived. 

•  I was diagnosed at 6 so I honestly don’t remember much before that I was so young my eating habits weren’t drastic. Good suggestion that was given to my mom regarding Halloween go ahead and trick er treat I would get tons of candy and then next day my mom would take me to a store to buy a toy in exchange for the candy. I honestly didn’t feel Like I was missing out on the candy I was more happy to have a toy. Luckily these days there are tons of sweets that are sugar free so if she feels bad about her child not eating that slice of cake at a birthday party exchange it with maybe a sugar free candy. Little things like that also don’t make a big deal about food. I never felt bad about what others where eating that I couldn’t because my mom didn’t keep them in the house so I never really thought about it. Hopefully that helps

Thank you to the Type 1 Sugar Mommas for sharing these responses. I honestly think this advice can be used by adults managing their own type 1 diabetes as well. Allow yourself to eat a healthy diet, have the treats, balance with insulin, don't beat yourself up or call yourself or your numbers "bad", and seek community for support!!