Samantha Walsh
Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.
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What advice would you give to a caregiver of a teenager with T1D? Cancel reply
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I’d suggest that together they google celebrities (sports, movies, music etc) who have T1D. It will remind the teen that nothing is impossible, and that dreams can be made, worked towards, and realized.
And, a comment from Geri Jewel, a stnadup comedian with c erebral palsy. She said that when she meets someone new, she always says: “I have cerebral palsy, what do you have?” As she says 9 times out of 10, they have something.
Teenager? I would give the parents the same advice I wish someone told my parents: These are tough times with everything from dating to what to get at the fast food place everyone else is picking to eat at. Please cut them some slack, they are going to make mistakes to help them learn, so, let them learn without killing themselves. Get a CGM that has a sharing app and let them go. Easier said than done I know. This is the best advice I could give.
Patience, patience, patience.
The ability to engage with our past actually informs our narratives of our life.
Many of us in the fourth quarter of life are less interested in scoring touchdowns and much, much more interested in appreciating how good and how bad some of those years were.
Allow them to learn their own care. Trust how they feel, have them learn to count their carbs. Teach them to check with a finger stick don’t guess. Also have someone know you are Type 1 when doing activities.
Be sure he/she sees an Endocrinologist, a Diabetes Educator, a Nutrionist. Have a Continuous Glucose Monitor. Personally, I strongly recommend an insulin pump, with Control IQ (Tandem/Dexcom combo.) Otherwise, allow him/her to live his/her life with lots of love and support. Good luck.
Don’t baby them too much. Help them when they need the help, but don’t hover. Teenagers – T1D or not – are seeking independence and want to be treated like adults. If you harp on them too much, they’ll rebel by not taking care of themselves.
Don’t stress out when things go wrong. Patience, love, and a calm accepting attitude go a long way to helping your daughter/son. And, of course, all of the other advise shared here.
Patience and understanding. Understand they hate they hate the disease as much as we all do but try to keep making sure they are eating healthy and enough plus making sure they are testing regularly.
Be their biggest fan and don’t be a helicopter parent. Otherwise, they will never be able to take care of themselves on their own, without hesitating. If possible, emphasize the importance of making friends with other T1Ds. I relied on those friends when it felt like I was most alone and isolated.
I just came across this Article and thought it would be a good solution for Teen Females! https://diatribe.org/harnessing-power-periods-a1c-testing?
I was a teenager a looong time ago. Like a couple of others said, well, don’t be a nudge! The biggest thing I remember about my teen years was sitting at my friend’s house, with her parents. They had some crackers and cheese out. My mom knocks on the door and gives us all a lecture about what I should and shouldn’t eat! How humiliating!! Please don’t do that! My mom was awesome and I understand that she must have been worried sick about me. But mom, really?! Oh, and teach them that it’s ok to talk about emotions. Remember, emotions themselves are not good or bad. They are signals for us to know what’s happening with us.
Managing blood sugar is very much a trial and error exercise. Everyone is unique and what works for some may not work the same for others. Talk to people, gain perspective. Trust your doctor, but ask questions.
Let them manage their diabetes because it is theirs to manage. Tell them you are there to help but you can’t keep asking, “did you ______?”
If you are a non diabetic, every-time you check your sugar w meter/CGM, it is always within range.
For us T1’s it’s hit or miss and if you’re a teen, this wonderful technology is a constant reminder of “perceived failure and not defiance”
We have amazing technology/tools that are a huge help w treatment and management but this is an exhausting disease that is constant 24/7.
Be patient and supportive and work w your providers.
I would tell them to be there for their teen, but watch over them from a distance. They have to learn how to handle this disease for themselves. Remind them that you are there to help, but don’t hover over them.
How you take care of your diabetes is your choice, but the better you take care of it the better you feel. You can still have fun just need to know how what you do affects YOU, not your friends, but you.
Don’t judge. Strongly encourage counseling.
Don’t assume your teen isn’t trying. Remember teen hormones snd stress have a massive impact on blood sugar. Don’t make every conversation with your teen about T1D.
Ask yur teen how ypu can support them.
So many great answers! I would only say the same things. Let them take control but be there for support. All any of us want is to be treated ‘normally’! I was dx’d in college and pretty much ignored for the next 15 years. Not a great plan but I did watch my sugar/carb intake and so far no complications. Plus there are so many advances now to help teens know where they are. If they are having DKAs, parents might need to help more or get some kind of counseling to help make better decisions. Then again, it might not be decisions but just how it works in their life.
Support and encouragement is bottom line.
The teen is capable of taking care of things, and must take responsibility before leaving home.
I wasn’t diagnosed until I was 18 y/o, but I imagine it’s challenging to be a positive support to a T1D teen without being overbearing. Being judgemental is rarely well received, esp by a sensitive teen. Simple supportive check in with understanding and humor work for this big T1D kid.
Allow independence. Treat them like you would treat any other child/teen. Monitor them for depression and anxiety. Let them vent about the struggle of managing diabetes daily and actively listening and be supportive.
Teenagers are, by nature, resistant to parental intrusions into their lives. A support group of other teens with T1D would be invaluable.
Never never never anger over issues connected with diabetes! Never ever special occasion gifts related to their diabetes! It’s ok to give diabetes related perks, but never for birthdays or other special occasions! Never express guilt that you, the parent, caused the diabetes. The guilt sometimes transfers. Here are the “always:” always treat your diabetic as you would any other child, with love, respect, and joy for who they are. Let them know you’re proud of them. Let them know you’re proud of them not only for how well they handle their diabetes, but for the other things they are! Send your kids to camp! That’s where I learned I wasn’t alone! Make sure they feel safe, and teach them how to be safe with their diabetes. Ask *them* what they need to feel safe! I could go on and on! I was diagnosed at age 6, and my parents made mistakes they didn’t mean to make. I’ve outgrown those effects, but some of the tips you’ll see in this comments page may be things you didn’t think about, so read them all!
T1d is something YOU must manage, a really great doctor can be of some help.
The only limits you are the one’s you set not what T1 sets.
We have a friend who is 75, she has been a T1 since the age of 9!!
My wife is a Ti and it make for a great support mechanism!
See an endocrinologist three or four times each year.
Find other teens who have T1D, make friends, share with them.
Use a glucose meter and a CGM, if they are affordable.
An insulin pump is a great aid. Expensive, but very useful.
There are some very good support groups online, they could help/
Following. Have a 12 year old living with T1D
Urge your child to study hard for a career in a profession he would like. Work usually distracts oneself from feeling sorry and depressed over 24 hours a day Type 1 requirements. I am a retired lawyer & judge who always was dealing with other people’s problems. Never had time to feel sorry for myself!
Shared phone app to both know blood sugar values at the same time working with a CGM
I use to coach newly diagnosed teens. My advice was to treat T1D like a pet rattle snake. To need to feed and tend it, but not being friendly creatures, T1D may bite you anyway, so be watchful.
🙁
You are in control you have the tools to keep your life in check use them know your limits know your body and know what to do without the help of a doctor know how to take care of yourself. If your pump breaks these are all things that you have to know to make it, a good life
Too make sure that they are educated
Teenage (and early 20’s) is the most unstable time. Be aware. React to situations. Adopt good habits and strategies. They may not be apparent in teen years (note instability) but they will pay off as the diabetic matures and their system “stabilizes”.
Keep your lines of communication OPEN. Don’t judge or micro-manage. You don’t live with this disease, they do. They will learn through mistakes and life events how to balance the daily challenges of living with T1D while engaged in all the other joys and responsibilities of becoming an adult. It’s day-to-day living that doesn’t require heroics. It requires determination, persistence and unwavering support. BE that support!
These years are TOUGH! Not only are their hormones making them more sensitive and irritated than usual, but this affects their blood sugars which increases that moodiness! Don’t worry, your little angel will return in some years and be thankful you put up with them. I’m sure you’re doing great!!! Don’t be afraid to say “no” or “that hurt my feelings” but also help them gain independence in managing their diabetes while still being there as a safety net. Yes, they’re not invincible, but they can do a lot just like most-I was in the musicals, volunteered, played sports, and earned all A’s. I also went on a Jamaican mission trip without a pump or CGM. It’s possible. Be their cheerleader…and remember to be your own as well 😊
Allow them to assume responsibility for all aspects of their own care.
They are their best clinician. Nobody knows their trends and responses than them. The sooner they start managing it on their own the better. I campes with a high school sophomore that told me her mom does all her management for her. Frightening.
Support them in using any diabetes tech they want to try.
You have worth and value regardless of your condition. Diabetes will only limit you if you let it.
Find a local support group. Learn as much as you can about Diabetes. American Diabetes Association is a good resource.
Find them a good doctor and or councilor (if they want one) that listens to them, hears them where they are at (not where they are “supposed to be”) and doesn’t criticize them or scare them. Support is huge with type 1 as a teen (or at any age) Families don’t always totally understand because they are reacting to their own fears and frustrations.
Don’t feed them the same thing everyday just because it’s easier cheaper. It makes it harder to learn real world reactions and can make having diabetes hard to take. Teach them a smart way to allow for birthdays anni anniversaries and thanksgiving trust them to make the right choices while you are there to catch them if they fail.
Take one day at a time. Teenage years can be challenging enough, adding diabetes management into the equation makes things even more difficult. Show grace and patience with your teenager, while also being honest about long-term outcomes of poor decisions when it comes to diabetes management.
You are stronger than you know!
Life is an adventure – and with planning you can do anything.
My one saving grace has always been getting exercise most every day.
You must treat them as if they are a true adult regardless of their physical age or emotional maturity. Learn their perspectives d-e-e-p-l-y. Back and forth must occur. If you seek to be truly heard, radically alter whatever your standard fear, threat, warning standard speech. Do the literal opposite from or of whatever you regularly did/do. Stick to that new channel, be prepared “deadly serious” to carry through… with it. Teens know the image they believe us to be, they have no idea who or what we were capable of before them. They can be surprised. Worst comes to worse you have had a meaningful serious conversation, more will happen. Whatever you do, HIDE your terror/fear(s). Keep them to yourself and private at all costs. Share them behind locked doors if you must? But your terrors/fears must not become theirs… they have their own! Teach them your fears, your terrors and they will keep secrets to protect you… Good luck… its gonna be messy.
Diabetes is about being mindful, organized and on top of things. Most teenagers aren’t. When you add into the mix hormones it can be virtually impossible to plot what blood sugars are doing. Don’t blame, help them to understand that this is their disease and any damage done now can’t be corrected.
To let them know that they have a choice. They can either allow their blood sugars to be out of control and end up with complications down the road (not right away, but eventually), or they can take control of their diabetes now, and live a long, healthy life. The choice is theirs.
My (then) new endo told me this when I was a teenager. I am now in my 59th year with Type 1 and have no complications!
Get involved at a camp as a camper or as a counselor in training. Attend a teen overnight T1D event. Talk with other teens who manage their T1D successfully.
Exercise, eat healthy and understand that right now your disease is not curable but you can live very well with T1D;
relax and realize they are going through many changes in their bodies that can effect their sugar level, Remember it their diabetes let them tack care of it themselves,