A beautiful Latino, (Hispanic) mother and daughter checking blood sugar reading on a glaucometer. Diabetes mellitus type 1. Juvenile diabetes. Monitoring bold sugar levels with constant testing and following a healthy diet is crucial in the management of diabetes.

6 Tips on Parenting a T1D Child

My daughter was diagnosed with Type 1 diabetes at the age of five nearly three years ago. Needless to say, this event upended our lives. We suddenly had to perform round-the-clock rituals just to keep her alive. We lived with constant fear of hypoglycemia, and we could not escape the reality that one small misstep could lead to seizure, coma, or even death. (Never mind the more remote threat of long-term complications.) These psychological and emotional burdens were compounded by financial ones. We quickly realized that diabetes is expensive—very expensive.

Diabetes’ tentacles reached far and wide, impacting my and my spouse’s professional lives, as well as our mental and physical wellbeing. It wasn’t long before we each developed our own stress-related health problems. As I’ve written elsewhere, I believe that these were psychosomatic. Sigmund Freud was right to call the body a pedantic symbolist. When one feels helpless, one can become helpless.

Over the years, we’ve found ways to take better care of ourselves while also taking care of our daughter—and our son, who does not have T1D and who too often feels like an afterthought. Of course, each day is still a struggle. We all move mountains every day just to manage diabetes. (And I use the word “manage” loosely.) But there are opportunities to take some of the sting out of diabetes. Here are a few of the routines that have most improved our lives:

1. Giving Our Child Options

Our daughter has T1D; hence, she is going to have moments of feeling deprived. There are inevitably times when we have to limit or deny treats when everyone else is eating to their heart’s content. For instance, if her blood sugar is over 400, dessert is out of the question—even if it is Christmas Eve. Because of this reality, we try to give her choices when and where we can. Sometimes, when preparing dinner, we let her select the protein, vegetable, and carbohydrate for the meal. We also include her in grocery shopping. Such small gestures give her a sense of control (however small) over her food intake.

2. Scheduling Time for Our Other Child

As already mentioned, our non-diabetic child is too often in the background. We are so focused on the day-to-day tasks of managing our daughter’s diabetes that it’s hard to keep him in mind, and this leads to further tension. Here’s a sample scenario: my son is trying to show me something he made at school, but the CGM is alarming. So, I acknowledge him with a reply that really means “go away” so I can attend to the more important task—treating the high or low. Then, he misbehaves either to get attention or to express his frustration. Being conscious of the problem helps. So does carving out time for him specifically. If our daughter is at a friend’s house or a doctor’s appointment, then one of us will plan to do something extra special with our son. We look for opportunities to orbit him for a change.

3. Braving Play Dates

Speaking of play dates, how have we learned to manage the tricky hand-off to other adults without diabetes expertise? It is definitely a challenge. I always feel pressure to strike the right balance with information. I want to give enough information to convey the seriousness of diabetes and to adequately instruct the person to manage it in my absence without scaring him or her away. The truth is, some people are scared away, but many are willing to take on the responsibilities of diabetes. In this situation, it helps to provide a cheat sheet for the caregiver to reference and a promise to pick up the phone on the first ring. I also take extra precautions, such as giving a few extra carbs to prevent a low or arranging for more frequent glucose checks.

4. Distancing Myself from Diabetes

Honestly, there is no escaping diabetes. Even when my daughter is under others’ trusted care, diabetes is on my mind. But I have noticed that there is one task in which it is more remote in my mind: reading. Perhaps because reading is so private and personal, it helps to drown out the other noise. My advice to other parents: find something that allows you to retreat. Even if you cannot fully escape diabetes, the distance is rejuvenating.

5. Guarding Downtime

My spouse and I are protective of the weekends and the hours outside of school. We limit organized sports, and we never over-enroll in activities like scouts, camps, or other events that require planning and driving. It’s not that our kids wouldn’t enjoy more activities—I know they would. Frankly, managing diabetes is exhausting, and we don’t have much bandwidth to spare. This may change as our children age, but for now, we just can’t commit. And guess what? Our kids still live charmed lives.

6. Putting Things in Perspective

It never hurts to remember that, just as we are burdened in some respects, we are privileged in others. Our family’s “mountains” may appear like molehills to others. The more fully we appreciate this, the more fully our daughter will, as well.

To read more from Audrey and others living with type 1, visit InsulinNation.com.

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Not Sure You’re Ready to Dive into an Online Diabetes Community?
We Can Help!

Diabetes can be an overwhelming and often very lonely condition to tackle. It’s something we can’t just turn off or deal with later; it’s there 24/7 and it can be hard for the people around us to truly understand what it’s like.

But please know that you are not alone! There’s a global diabetes community ready to support you, and you can participate as much or as little as you like. Even if you’re not ready to (or interested in) meeting other people with diabetes in person, there are several ways in which you can communicate or just listen in and learn from people in the same situation as you, by tapping into the Diabetes Online Community (DOC).

The beauty of the DOC is that you can access it from anywhere, as long as you have internet connection. There are probably other platforms as well, but the ones I have found to be the most powerful are Facebook, Instagram and Twitter.

DOC on Facebook

There are over 100 support groups for people living with diabetes just on Facebook. There are groups only for women, for parents, for athletes, for foodies, Dexcom lovers, you name it.

What’s important when choosing your Facebook group(s) is that you like the tone and content of the group. Some groups are very focused on the emotional parts of diabetes, some are very “how-to”, and some have strict rules for what you can post. You may want to join a few groups and see if they fit what you need. Remember, you can always leave the group if it’s not right for you.

Simply do a search on Facebook for “Diabetes” and choose “groups”. A few of the larger groups are Type 1 Diabetes, Type 2 diabetes support group global network and Diabetes Strong Community (Full disclosure, the last group is mine). While many groups are diabetes type specific (type 1, type 2, etc.), the Diabetes Strong Community is a global peer support community welcoming people living with all types of diabetes.

I see posts almost daily from people saying that the Facebook diabetes community has changed their lives and that they now for the first time have a support group of people who understand what they are going through. It’s such a powerful thing and I really encourage you to at least join for a while to see if you like it.

Note: Many Facebook groups now have a questionnaire when you try to join asking why you want to join the group. This is not to collect your information, but to make sure that the people who join the groups fit the profile, and to reduce the risk of letting in “internet trolls” and people selling fake diabetes cures.

DOC on Instagram

Instagram is a fun platform where you can get a glimpse of how other people tackle their diabetes on a daily basis. You don’t interact with a big group like you do on Facebook, but it’s an opportunity to connect with individuals in an informal way and get to know them a little.

The good thing about Instagram is that it’s very easy to find the DOC. You simply search for the hashtag #diabetes and go from there. Once you start “liking” diabetes-related posts, Instagram will automatically start recommending similar profiles.

Since it’s a more informal platform, this is most likely not the place where you get the deep connections that you can get on other social media platforms, but it can be fun and informative.

Note: Because people only show a very small part of their lives on Instagram (often the best parts), Instagram profiles can sometimes show a slightly one-sided view of what living with diabetes is like.

DOC on Twitter

The DOC is very active on twitter and the hashtag #DOC is frequently used. Several twitter chats are hosted weekly and you can follow along and read people’s answers or dive in and participate yourself. Twitter is also a very active platform for diabetes advocacy if you’re interested in getting into that.

One of the strong Twitter chats is the #DSMA (Diabetes Community Advocacy Foundation) chat every Wednesday at 9 p.m. U.S. Eastern Standard Time. There’s usually a weekly subject and the chat is guided by a moderator who lists a series of questions that people then chime in with answers to.

It’s not just for people living with diabetes but also caregivers and family members.

Note: If you get stressed out by having to participate in real time chats (I know I do), you can always go back and add your answers at a later time. Just search #DSMA, and the questions will show up.

Venturing Beyond the DOC

If you’re ready to connect with other people living with diabetes in “the real world”, there are plenty of opportunities to connect with others both in larger settings and more intimate ones.

Since you’re reading this post on TCOYD, you might already know about the many TCOYD conferences held across the U.S. But if you don’t, these events present a great opportunity to meet other people living with diabetes and learn more about different diabetes topics presented by top-notch diabetes experts.

If you live in the US and you prefer smaller gatherings, try searching for local groups on Meet Up, check out the local Diabetes Sister chapter (only applicable for women) or reach out to your local ADA or JDRF.

You can also use the online community to find local events. As an example, we have a local group of people with diabetes here in Los Angeles who meet up regularly to go to Disneyland together. They coordinate their meetups on Facebook, Instagram and Twitter.

I hope this post has intrigued you and made you curious to explore the DOC and meet others living with diabetes and facing similar daily challenges. If you’re still hesitant, please know that:

You are not alone

You do not have to deal with this alone

There is an ocean of people living with diabetes who will gladly support you.

Come join us!

To read more from Christel and the DiabetesStrong community, visit DiabetesStrong.com.

researcher dropping the clear reagent into test tube with periodic table and chemical equations background, for reaction testing in chemical laboratory.

Cure-Based Therapies for Type 1’s

What the heck are cure-based therapies? Well, the AP is not a cure but a darned good form of therapy that will bridge the gap until there is a cure. This talk will focus on the area of research that is going for the gold…a real cure…from prevention for our loved ones who have tested positive with diabetes-causing antibodies to the implantation of islet cells. This panel of experts has some of the world’s smartest folks in this space and will leave viewers with some real hope…and hope is where it’s at!

Pattern Sugar Cubes on a Pink Background

Sugar Surfing

You can’t stop the waves of fluctuating blood glucose levels but you can learn to surf. For those considering or already using Continuous Glucose Monitoring, this talk is for you. Dr. Stephen Ponder, a pediatric endocrinologist and a type 1 himself, takes you beyond the basics and shows you a better way to manage your blood glucose levels. He debunks the myths surrounding classic diabetes management while teaching you a better way. Watch him “Hang Ten”!

Quarrel between women and men

A Debate: Pumps vs. Daily Injections

The conclusion of this debate will be that it comes down to personal choice, but Dr. Edelman will be battling it out with Dr. Irl, his type 1 brother. Expect a lively exchange of information on the pros and cons for each form of therapy. It is important to know this is a real debate that will make you think about your choices for how to control your type 1.

man think how to solve the problem

How to Deal: Diabetes Complications

No matter how long you have had type 1 diabetes, complications are something we all fear.  You might be complication free but waiting for that dreaded shoe to drop, or you might be dealing with multiple complications and struggling with the guilt and blame.  This talk is structured as a group therapy session for type 1s that want to talk about what we all are trying to avoid.  Leave your judgment and blame at the door for this emotional ride.

Prescribing, overprescribing prescription pills concept with blank RX form and falling tablets, close up in natural light, shallow DOF.

Treatments for Type 1 Other Than Insulin

Sure type 1s will always need insulin to treat their disease, but is their anything else out there to take that can help us keep our blood sugars in control.  The answer is frankly, yes.  Come learn about other medications already approved and being studied that can help lower blood sugars, improve time in range, and can help you lose weight!  What???????? Yes, it’s true!