Howdy!
So I am curious what the biggest thing any parent’s learned in the beginning of their journey with a diagnosed, T1D child?
I guess my wife and I are so inundated with information right now, it’s hard to sift through it all. We feel like we do good at just trying to manage the BGL numbers and insulin injections. But everything else just is kind of overwhelming.
So if anyone can distill down some big things to keep in mind. That would be great.
Thanks so much!
Peace,
-Albert
Hi @AGSJunior . I’m not a parent of a cold with Type1 - but was the T1 child and I’ve had it for nearly 60 years, so if you don’t mind my jumping in here I’ll share some thoughts.
My parents did a great job with me - diabetes and otherwise, but I do wish a couple of things had been “trained into me” early - the earlier habits get started the easier they are to keep.
First, I wish we had focused more on good food choices. I grew up when Moms were the family dietitians, and focused on 3 square meals a day. Of course the concept of healthful eating has changed since then, but she did try her best according to the guidelines of the time; and she didn’t care for junk food - diabetes or not. My dad on the other hand didn’t want me to miss out on things due to my diabetes, so he brought home cookies and snacks - which my mother tossed out if she found them (I laugh when I think about it now😊).
There’s much more flexibility with what we eat now - gone are the short and strict lists some of us recall. Even so, I still gravitate to junk food more than I should and it can be difficult for me to pull back. I do admire people who learned good habits - including moderation - early, and stick with it. Learning to focus on healthy eating is good for anyone.
The second thing to try to incorporate is activity as a lifestyle. I have friends who have a definite practice of regular walking, biking, gym - whatever the case may be. One friend gets on her treadmill when she’s frustrated and she says it can be hard to pull get off!
Growing up I had gym class through high school and recess in grade school - often outdoors. A little older, I walked to the store, and played outside, rode my bike, and ran around (literally or figuratively) with my friends. I did some team sports in high school, and in college I biked and walked around campus, and played some intramurals, but those were just “things I did” rather than a conscious effort. Now that I’m older I do wish I had gotten into a deliberate habit of being physically active.
Make those things fun and enjoyable while s/he is young, and hopefully it will just take a little encouragement for them to keep at it.
By the way, there are celebrities with Type1 - musicians, actors, a Supreme Court Justice, a professional race car driver and professional athletes.There are not too many things that are off limits.
All the best to you.
Hi Albert,
I’m 15 years old and my 13th birthday present was T1D! Since my diagnosis was less than 3 years ago it’s still very fresh in my mind. I definitely remember the overload of info- it will get better. Especially since so much of that information is implemented in day to day life.
Here are the biggest things I learned:
The nurses at my childrens hospital emphasized that my life would be “normal”. That is true to an extent, I am able to do everything normal teens can- I have A’s in my classes, I have lots of friends who I spend time with, my family just completed a year of extended traveling- but type 1 is never normal. I had to learn to accept that fact. Most teens don’t have to think twice before getting in the drivers seat, going out to see friends, or taking a test in school. My friends don’t have to do math every time they eat or when their phone beeps at them. But that abnormalness is something that brings a lot of benefits- I’m more responsible, I have more emotional and physical self control (no slapping when I’m high, no eating the cookie when I just ate lunch), I’m more aware of my body, and while most of my peers search for instant gratification, I know that the choices I’m making now will affect me far into the future.
One of the hardest lessons I learned is that while my blood sugar is “MY blood sugar”, that does not mean it’s a reflection of me. The numbers on my CGM and glucometer are numbers that tell me sugar levels, not if I’m extraordinary or a dummy. This was really hard when I was first diagnosed because it took a while to find the right insulin doses. For the first two months my blood sugar logs regularly read between 200-500 and it was hard for me to accept that this wasn’t my fault or a reflection of me as a person. Some days it’s still hard not to look at the numbers and start viewing myself through them.
You might already know this one- learn to go with the flow. Diabetes is unpredictable. It’s an a+ b= x, y, or maybe p kind of disease. You just have to be flexible, expect the unexpected, and have a backup plan for everything.
Some things that I appreciate from my parents:
When my blood sugar is high/low and I’m being rude or taking my emotions out on others, they don’t punish me for the high but for the behavior that came from it. Like if I’m 234 and I slap my brother, they punish me for slapping my brother, not for being 234. I believe that this is absolutely critical- When I’m in my twenties and have a job, if a coworker is rude or something, I don’t want to blow my top or start weeping out of control just because my blood sugar is high and I didn’t have the self control to say “I’m not feeling well right now, can we discuss this later?”. That would not be good for me, my coworker, or my employment status.
Another thing I appreciate is how my mom helps me come up with phrases that clearly communicate what I need in certain situations. When I’m high or low, I have a hard time communicating clearly and succinctly about what I am feeling, what I need to do, what I have done, and if I need help. My mom often gives me feedback after I’m back to normal. She helps me come up with lines like “I’m having a low blood sugar and I’m dealing with it” so that I can say what I need to and so that my teachers/friends/other adults know that I’m OK or that I need help.
Rereading this post, I’m thinking that this might not be what you’re looking for exactly but I hope it still helps! Diabetes might have been the worst birthday present I got, but it has turned out to be the best.
Good luck with figuring it all out.
Ps- If you can, get a CGM! Continuous glucose monitors are awesome! I have the dexcom CGM and after I insert the patch, it stays on for 10 days and I rarely have to poke my fingers. I don’t feel the CGM at all- I usually forget that it’s there. It sends my blood sugar readings to my cellphone and to my mom’s every 5 minutes and there are alarms I can set for when I’m high or low. Those alarms are especially helpful for if I go low at night because I don’t wake up on my own. It’s my favorite diabetes tool and if your child is still young or rebelling against shots/finger pokes, it could help you out a lot.
Hey there! Just another type 1 whose now an adult but was diagnosed as a kid. I myself do not have kids yet, but remember what it was like to be diagnosed.
For me, it was right before Christmas. I was 11 just a year or so before I started puberty so you can imagine just how terrible it felt. I was young enough to not realize at first that diabetes was life changing (seriously when I got my diagnosis from my pediatrician I remember just laying down and feeling relieved that I wasn’t insane and my symptoms were real and when he said I had to go to the hospital I was like okay not good but they’ll take care of me, I’ll get better that’s that) and old enough to realize once I was aware enough that my life was going to change.
Overall, I’ve lived a life very similar to people my own age. I’ve had periods of why me moments that were way more prevalent as a teen then they are now, but even now there are times where I really resent that I have to extra think everything through. I don’t remember what it’s like not to be diabetic anymore but I can definitely tell you I have days where I resent the fact that I didn’t get to party hard like everyone else in college, that I have to think about whether or not I should really eat pizza today, and that things that are already hard for people without diabetes (think being sick, dealing with loss, hormone related things like periods and pregnancy) are going to be even tougher for me.
My parents did a few things that I think really helped me with diagnosis and getting on the right track.
From day 1, they made my diabetes mine. They were there for me of course, but I was in charge of my injections, I was in charge of counting carbs and I was in charge monitoring myself. I accepted my diagnosis fairly easily so I did this stuff without a lot of hesitation but I’m glad they didn’t “baby” me. I think it made me a lot more equipped to handle it.
They let me be a teen. There were very few things that my parents interfered with. I played sports, I still had sleep overs, i went on ice cream dates, I had a part time job, I went to college. Every single time I’ve thought I couldn’t handle something because of my diabetes they have pushed me to rethink it which I’m glad about!
The biggest piece of advice that I wish they would’ve done a little different is there were times when I had rough blood sugars and it wasn’t always because I wasn’t carb counting correctly or what not. Sometimes your kid is going to by textbook do everything right. Sometimes even when everything is right, their blood sugar is going to be 250-400. It’s really hard to be asked questions about it because sometimes you don’t know why. I’m a bit of a perfectionist so I sometimes take that as criticism and it’s something I’ve had to work hard to break myself from. My parents weren’t mean by any means but being quizzed after dinner because your blood sugar is 285 doesn’t feel good. It’s natural to want your kid to have good control, but remember a day out of range or a number is just a data point and it’s going to happen. Asking comes from love, but pushing can make it feel like it’s our fault which makes dealing with it so much harder. There’s no such thing as a good diabetic or bad diabetic and every single person here will have bad days and amazing days where it’s like am I even diabetic as they shove their face with ice cream (those are the best days from the diabetes gods 
)
It’s a serious diagnosis but with a good sense of humor(trust me it’s not funny now but you’ll have little moments that pop up. Try going to target and asking your kid if they’re high and see the faces around you) and a good support system, you’re going to be giving your kid literally everything they need.
December 30th will be three years since my then 11 year old daughter was diagnosed. Any time I hear of a family like yours going through that initial diagnosis period it brings me right back to that flood of emotions and constantly feeling overwhelmed. I often say that having a child with T1D is the ultimate cure for debilitating perfectionism (which I have). Through no fault of your own there is no such thing as perfect. Things will work and then they won’t. Blood sugar numbers will be great and then they won’t be. Consistency is key. My husband and I kept daily log sheets of our calculations so that at any time we could look at what either one of us had done and determine if there was a miscalculation or just something that needs to be handled differently the next time. It was a great reference for meals that were eaten often so that coverage could be tweaked as needed. In the beginning especially carb ratios and correction factors changed regularly so we always had up to date information at our fingertips.
It was so rough emotionally on our daughter who was also going through so many other adolescent changes that it was important for us to remember to let her feel what she needed to feel and not always try to fix it. It’s a lot for everyone. The best news is that it DOES GET BETTER! It doesn’t always feel so overwhelming and there will come a day that you talk about something other than T1D again. Hugs to you all!!