56 Comments
What advice would you give to a caregiver of a teenager with T1D?
You must be logged in to post a comment.
© 2022 T1D Exchange. All Rights Reserved.
Help in the education of their condition, Show by example ‘healthy eating habits’, provide supportive assistance when they are struggling, and praise when they achieve goals (help them set gosls), keep healthy food in the house for them to eat (show by example) and help them learn about the impact of carbs, proteins and fats and how they impact their BG’s
As a mom of a 15 year- boy with type 1 diabetes and an endocrine nurse practitioner, I would recommend understanding that 15-year-old’s have a lot to worry about, and while they are trying to develop and figure things out in life, their diabetes is just an extra stressor. Show some leniency when it comes to their diabetes regimen and care. They still need guidance and reminders and try being patient with them.
Talk to them!!! Ask them what they miss since being diagnosed, do they feel different than everyone else, ask them deeper questions about dating, sports, treatment types, outlook on life they have, do they want to talk to anyone like a counselor? I went through a lot, I was diagnosed at 13. I shut the world out and my parents did what they thought was right by cooking treats made with apple juice, getting the first glucometer and never asked me a single question. So, I recommend find out where they are mentally and work with them, never assume. It may cause bigger problems in the future.
check your blood sugar and inject insulin
Educate them….do not smother them…make them responsible.
Be there for him/her, but give him/her a wide berth. (No, seriously, leave him/her alone unless s/he asks for help.)
Teens with T1D should learn from other T1 teens, preferably those living in the same area. Meet with them and share experiences. The more experienced teens can be very valuable friends. Attend diabetes meetings or conferences. The Friends for Life T1 conference held in Orlando in July of each year is wonderful! So many other T1 teens there and diabetes educators offer so much diabetes information.
For me going to a summer camp only for kids with diabetes helped me a lot. I recommend this for all young children and teens. I was seven when I was diagnosed with the disease. I knew no other diabetic at that point so it was nice to see others like myself. I saw teens at this camp who used their disease as a crutch. I knew that was not what I wanted to be.
Be patient! Don’t freak if glucose rises to 200 and you don’t know why. Exercise and count all carbs. Be kind!
So many things:
1. Don’t make every day about their blood sugars. They CANNOT do T1D perfectly, and if you start every conversation with “what was your blood sugar?” “why were you high?” then they will feel like that’s all that matters and want to hide their T1D from you as much as possible.
2. Don’t grade their blood sugars. Don’t scold them for highs. Don’t scold them for forgetting to dose. Build them UP by saying, “I know this is really hard. Every blood sugar is just information. You’re doing great no matter — some days you’re gonna be on top of it, some days it’s gonna be hard to make it a priority.”
3. Let them struggle, let them screw up. It’s their disease. They have to be able to learn how to manage it and struggle at the same time.
4. Give them a huge hug and tell them, “This is really hard. You don’t have to do it perfectly. Some days your best is gonna look great, some days it might look like a mess. It’s okay. Just do your best. Let me know what kind of help you want.”
5. Never ever ever ever react to a high blood sugar with anything but a “That’s frustrating. You’re doing amazing.” We carry so much guilt already over every high number, we don’t need more guilt from family members.
I can’t imagine having T1D as a youth. I was 25 when diagnosed. My only advice is to tell everyone you know. Don’t be embarrassed. There is no shame. There will be a a few friends whose empathy and curiosity will protect you and they’ll watch out for you. I have found as a general rule in life to own up to your deficiencies. Whether it’s an illness, a learning disability or other life challenge. It’s liberating.
Remember to parent your adolescent separately from their diabetes.
too many unknown variables for a proper answer ……… ” caregiver ” … as in family & or outsider ?? Age when teen was diagnosed & their method of control. The HUGE item is to totally understand their way of thinking & general mindset of everything around them & well realize this will alter as time comes forth. Could write a short story about this aspect.
“You are more than your disease.”
Try not to react in anger when they are running high – a lot. Encourage healthy eating habits and adopt them, too. You will benefit from it as well. Their brains are still developing and they won’t always make good choices and highs (and lows) may impact their impulsiveness. That doesn’t give them a free get out of jail card (a Monopoly reference). They still need to be held accountable for their actions and choices. Affirm their feelings about their disease and get them mental health services if they need them. Remind them that they are worth taking care of their diabetes. Lastly, as I was once told, remember that they are not fragile, they can do normal things like everyone else.
Be patient with them, but don’t lax too much. I had a friend in high school who was diagnosed with T1D when we were kids. She had always been diligent with her care in the early years, but by the time we got to high school, she had slacked off a bit, being more concerned with being a “normal” teenager. Don’t breathe down your kids’ necks, but still keep an eye out for them.
I would tell the teenager to be strong and to not be ashamed of having T1D. When I was growing up with T1D I was often asked to go to a bathroom to either inject my insulin or test my blood. I always refused to do this as a bathroom is not the place to do these things. The Americans with disabilities act has thankfully given T1Ds protections against other people’s demands that we need to do our diabetes management requirements in bathrooms or closets. Also, educate friends and teachers about the signs of hypoglycemic episodes so that they can provide assistance if needed. Always have low blood sugar emergency kits on hand if needed and teach others how to administer the Glucagon injection. Never go anywhere without glucose tabs or whatever they use to correct a low. Also have all your diabetic supplies with you. My book bag was loaded with not only my school stuff but my diabetic supplies and boxed milk and boxed juices. We T1Ds always look like we are going away on a trip rather than just going away for a little while. Also, join a T1D support group. I wish that I had this T1D exchange while I was growing up. I often remember telling others that “diabetes is not contagious, you are not going to catch it from me”. I was always mindful however of disposing of the lancets, needles, alcohol wipes in a respectful manner.
Establish agreement on what teenager would like help with to be as healthy as possible and that you love them and will be concerned about their health. When you see them doing well, tell them you notice that and are proud of them and appreciate their effort at being well. If you see them doing something they know they shouldn’t dont’ say anything about it. Later ask if they need help with anything you could provide . Stand up for them always. Ask if they want to help cook or fix meals occasionally and weigh fruit or breads or count carbs in the process
totally agree with camp for teenagers. ! Best to know you are not alone and may make long lasting friendships at camp
We are all different, one size does not fit all, listen to them. They have unique experiences with their diabetes.
Don’t let them do whatever they want even if it makes them mad. They will thank you later in life.
Be kind, be patient, hold back on repeated nagging. Your teenager is likely experiencing much anxiety. Explore the possibility of a diabetes camp experience. Here is one camp camphomitakoda.org
Be patient
Take things slow, you can’t turn a big ship around on a dime. Work methodically and engage in research together
If the teenager is progressing with good diabetes skills & shows responsibility; then extend his own management at a school function. This way he feels empowered but you can have facility available to check on him during the event.! But, make yourself available as his backup plan, especially in the social setting of teenagers!
Patience and understanding. It can get rough when, as a T1D you have to put more effort into things and cannot be as spontaneous as your friends. I did not talk to my parents about my struggles during my teenage years, and while they are both supportive, we did not have diabetes related specific conversations. Be a sounding board, offer support, there are so many resources today so there is a plethora of assistance out there, your teenage T1D might need some help connecting with those resources (podcasts, influencers, articles, events, camps).
See the most qualified Doctor
An Endochreologist
Be the best care you can
Jim.
Make them as independent as possible. If they are not using a pump with CGM and it is available, switch.
Find therapy. Even if your teen seems perfect they need therapy.
Not just the teen, the whole family needs the tools therapy provides.
Listen to them. Let them talk to you about what is frustrating them. I am now a grown adult but I was diagnosed with Type 1 at age 13 during my freshman year in high school and it was not easy.
Be patient and take on the role of coach. Remember that having T1D is like having a pet rattlesnake. You need to tend it, but it may bite you anyway.
Even before becoming a teenager, I w anted to do all the normal things (dx at 10). I understood that in order to participate in life the way I hoped to, I needed to be in charge of my body and be independent. My parents encouraged independence. The endocrinologist encouraged my parents in that regard. I guess it is easiest when a child is old enough to participate in management, but teenagers certainly should be.
1. Take a cooking class together — beats lecturing about diet.
2, Go grocery shopping together — ask the kid to make a list of favorite items that aren’t junk.
3. Be the host or driver for events. You can be in charge of food — design the menu with the kid.
Balance. Managing diabetes in a teen is something I do not wish on anyone. Having been a teen with T1DM and now being a parent, I can say that too much independence too soon can lead to poor management, and what’s worse, bad habit forming. Give independence, but only if it is earned. Focus heavily on habit forming and healthy coping rather than specific diabetes metrics. Forming good habits will last a lifetime and once established will improve outcomes. Also schedule a diabetes meeting at set times to discuss concerns and issues in a controlled manner. I imagine meeting 1x a week would be much better than random text messages from your mom, who is watching your Dexcom, asking if you bolused…. I mean how invasive is the follow app?
Don’t ride them. In other words, let them be teenagers, don’t harp on them about blood sugars and eating right. If they’re on a pump especially. Those of us who have Ben type1’s for 50+ years made it without cams and glucometers.Let kids be kids. Don’t embarrass them in front of other teens.
Please show them grace. Have patience. Don’t let them feel like they are failing you (the parent). You want what’s best for them and you want them to be healthy…make sure they know you’re looking out for them because you love them and care for their health. Please don’t micromanage or set ridiculous standards that may be too difficult for them to achieve. It’s also probably not a good idea to look up their pump and cgm info all the time to get a “report” of how they are doing and question every little thing you don’t like. That makes the teenager feel like this is a grade. Trust me from someone who is trying to undo a lot of this. My parents loved me and cared for me, but it felt like my a1c was a grade and if I didn’t do my homework (filling out my logs, checking my bg when I was supposed to) then I was a failure in their eyes. Take it from me, forgive your teenager’s mistakes and have grace. They have raging hormones causing bgs to go crazy, they are learning who they are and how they fit into this world, dealing with schoolwork, social pressures, and the last thing they want to deal with is stupid diabetes. Show them grace.
Get their child on a Tandem x2 pump and Dexcom cgm asap!
The same advice my brother who also has T1D gave me when my son was diagnosed. Help him to become independent, then pick a date, say 18th birthday and say this is yours now and don’t ask him about his health but let him know that you are available if he wants to talk about it.
There are many different situations that would impact the answer. Keep the lines of communication open. Provide support, but don’t hover. There are in person and on-line support groups for both parents and teens. Summer diabetes camps are one of the best ways to learn you’re not alone with a T1 D dx. Working with a mental health therapist who has knowledge of chronic disease issues can be helpful for the whole family. Remember to be patient, forgiving and ready to listen before talking.
Make sure to get a DEXCOM CGM. Game changer!
Worry about and work on their mental health early on. Available technology has made living with T1D so much better than of old but still, what distances a teenager from their peers is often very troubling. You might not see it.
Be kind.
They are a person first. Don’t judge them with a pass or fail attitude. Just offer support to help if or when they request it.
Never get angry over their BG levels. Always lovingly encourage them. The teenage years are crazy times normally, add T1D on top of that and it’s hard. The hormones affect BGs. Don’t assume they have done anything wrong. They will be more open to discuss T1D issues, if you are a safe place. Even when they do not talk about it. Be patient and let them know you are there for them when they are ready.
Do not speak about T1D in a bad way when they are with you. Do not talk about it, if they don’t want you to. Ask permission first before you bring the subject up in front of people. You know your child best. Some may like the attention, but most do not want it. No one likes to be different. I was a teenager with T1D. My mother embarrassed me a lot, even though that is not what she meant to do. One time she told the hostess at a restaurant that “we could not wait the 30 minutes for a table because my daughter is diabetic.” I wanted to die from embarrassment.
Remember your teen years and the influx of ideas that you contended with AND ADD T1D TO THE MIX! Think first she/he is a teenager and then add the T1D. Remembering to grow into adulthood WITH T1D takes a lot of courage. Praise him/her for being up to the challenge!
Never lose hope or faith no matter how bad things get especially with diabetes we are all soldiers in our own army and fights but some day we shall win the battle together.
Children and teens with T1 diabetes grow up to be adults with T1 diabetes. Once they understand and have established the basics the their own self-care routines allow them the space and grace to learn and grow at their own pace. Be there for them when they need you for guidance and ask for your help. You must learn to let go of your fears, worries and and negative emotions about your teen living with diabetes and trust that they will grow up into responsible adulthood with self-care resilience.
With nonjudgemental guidance, acceptance and trust from the adults in our lives, many of us become masters at managing our own diabetes self-care tasks very early on in our life long journey with diabetes. It helps to encourage and facilitate connections with other T1D and for you to connect with other parents of T1D teens. Tell them about Friends for Life Children with Diabetes conferences and encourage them and their teens to go. It’s an affirmative life changing experience for both T1D kids and the adults in their lives.
So many good responses… The podcast I listen to seems have a pile of parents practically killing themselves to ensure their babies reach not that “25-30” complication free, but to compete in everyway to their classmates. My own opinion?
~Forgive yourself for bad levels: everyone has them. The highs, the lows, if diabetes was easy we’d all be happy on shots
~Never-ever say the worse cases. Never describe the risks of neuropathy, eye or kidney problems, amputations. Instead mention ‘in passing:’ “Did you see how Mark Andrews kicked butt and set records?” (he’s a T1D tight end for the Ravens). Or how Halley Berry doesn’t know she’s gonna fall in love with a short, bald, old guy in Alabama.
Yeah 30-40 years ago life was really a struggle. Still is because sometimes we look at the worse, even with our fears right but now with better insulin, monitors CGMs, and knowledge right now is the absolute best time to be TYPE 1.
In the end though for the parents I honor and respect their work, fears, and efforts. Let someone help and love yourself, I’m happy I’m the T1D and not a nephew, niece, hell not even my dog!
Don’t constantly ask “Should you be eating that”, don’t hover like we are made of fine china, don’t overmanage, just provide support and guidance. I’m sure it is harder on parents than on the teenager. My mother was excellent at letting me live the life of ‘normal’ teenager. This was in the mid-70s, so food and drink in classrooms was not permitted. I just kept candy with me and took peanut butter and jelly sandwiches with me for marching band.
I haven’t had the experience parents of a T1 have, so take this with grain of salt. If you haven’t already, start turning over responsibility for their T1 care to them; if you have started, continue. For both, the goal is for the teen to know and understand all the responsibilities from order supplies to injections/pump use to dealing with bad sensors, tubes, the whole ball of wax. They’re on the verge of going off to school, getting jobs, and making all of the decisions you used to or continue to make; if they don’t already, they need to know how to take care of themselves with the proviso that they can ask whatever questions they want as long as they’ve got their own answer already in mind. You probably have a better judge of their maturity level than they, but even the most mature will do questionable, if not flat out stupid, things (just like most all of us did at their age). So, if you haven’t had “the talk” (no, not that one), then make sure they know how their treatment is affected by drinking, partying to all hours, and the inevitable food and other choices they will make, (maybe even studying to the wee hours?). Life is going to be almost totally in their control, it’s exciting and terrifying all at the same time, but for T1s there’s this one added thing to deal with….
Try not to take every mood personally. I remember feeling so bad after having a sour mood with my mom due to a high or low which I had such a hard time controlling–it really felt like it was controlling me probably because of all of the hormones. However, that’s not to say that your teenager shouldn’t have consequences for their poor speech/behavior. We should always apologize whether what we said/did was from a high/low or not. Accountability with grace helps breed discipline and not a “poor me” attitude that might run the home.
Perhaps help your T1D teen to connect to a famous T1D and discuss the steps they took to become successful whilst having T1D (ie. disciplined yet showing self-love, healthy, balanced etc.) Discuss lifelong goals/dreams and how to achieve them–be their number one fan! (As I’m sure you are!)
Always have low carb snacks lol and discuss the importance of bolusing for them.
It’s so easy to connect to community these days. Even if they don’t want to in person, they can online or you can even suggest they follow T1D memes as a sort of therapy.
I definitely recommend giving them more and more responsibility as they get older, but check in with them as well…because they probably won’t. As a teacher, we say, “What questions do you have?” Instead of “Do you have any questions?” and it gains way more participation.
Remember: You’re doing your best 🙂 <3
My advice is to trust your teen! As a person with diabetes he/she knows what they should eat and how much insulin to bolus – – unless they are newly diagnosed. So, I would advise you to pull in the reins a bit and let them take more control of their health. This doesn’t mean you don’t ask questions and keep an eye on them, just do it less than you did when they were younger.
Happened at the gym. Offered to the parent that I have had T1D for 52 years, and they will do fine. Especially because of CGMs. Parent said the teen was diagnosed at 2.5 years, so not as many life adjustments needed for T1D during the teen years.
They will cheat. Don’t make a deal out of it.
Teach them EVERYTHING about management and treat it as though it’s how to change a tire on the car that they are expected to drive responsibly, then treat them like what they are, an informed, NORMAL teenager.