Advice for Parents From Adults Who Grew Up as a Type 1

I am very grateful to have been diagnosed with type 1 diabetes at the age of 37. I think of all the times where having type 1 would have been challenging growing up. Navigating diabetes and childhood and adolescence isn’t easy but with love and support, anyone growing up with type 1 diabetes can thrive!

Oftentimes there are discussions within the diabetes online community that help others on how to navigate their role in this disease. Whether they are the person living with diabetes or a “type 3”, which is a loved one or caregiver, many people seek advice from others who have lived through it. A common post you will find is a dedicated parent asking for help from those who are now adults but have lived with this condition almost their entire lives. Being a parent of a child with type 1 is tricky, to say the least. You want to give them independence but you also worry and it is a tough balancing act.

We decided to ask our community of people with type 1 who have lived with it since childhood, “What do you appreciate most about how your parents dealt with your disease and what do you wish they did differently?”

Let’s be clear. This isn’t to fault or finger-point at parents who have a challenging role, as not only a parent, but a pancreas too. This information is solely to serve our community with insights and observations that can help them play a positive and supportive role in their child’s journey.

Photo credit: Adobe Stock

Here is what people who have lived with diabetes since childhood had to say:

“I cannot tell you how vital my parents were. They made this normal. They changed everything they were doing in an instant. If they questioned anything they never did it in front of me. They supported me and they encouraged me. They taught me to look at this as an opportunity to educate others because I was diagnosed in 1980 and we knew no one at the time. They taught me resilience and self-esteem in handling this disease. They let me know I could do anything. When I wanted to go to college far away, they didn’t discourage me. They never held me back. And this goes for every aspect of my life, not just this. I miss them both every day because they were my biggest fans and I knew it and still do.” – Sarah G.

“My parents didn’t hover. They basically let me control it with support and help. They guided me, we talked about it frequently, but they didn’t control it…I was diagnosed at 8. They never told me I couldn’t stay at a friend’s house and never treated me differently. I was able to do everything a normal kid would do.” – Andrea H.

“Encourage self-reliance. This is normal, We are normal. I am always in awe of you parents. You are amazing.” – Sarah G.

“I was diagnosed at 15 and felt capable of managing it. They didn’t bother me yet encouraged and helped in any way I needed. What I wish I knew was about low-carb and not just follow mainstream medicine. But hey, I’m not sure how open to that I would have been as a teenager so who knows”. – Shaina R.

“They bought me a pony, which I took full care of and showed them. I was up at 5 am and didn’t stop to the sun went down. Oh yes, I had diabetes. OK, I will handle that too.” – Laura W.

“I like the idea of making it into a science experiment. Obviously, it all depends on the child and parent and other considerations but an approach of “thinking out loud” is a good thing.” – Halvdan W.

“Back in 1971 when I was 16, I imagine that a doctor told my parents I was old enough to handle it by myself. They never told me that but they didn’t even learn how to give shots or test my urine! But back then, one shot a day and testing urine weren’t that big of a deal. I’m glad they did it that way. I just figured it out on my own and I’m better for it. Now I’m healthy at 66 and happy!” – Aimee P.

“I’m glad they made me take responsibility right away.”- Kelly L.

“Unwavering support. Crazy over the top, unwavering support and agreeing with me anytime I screamed, cried, cursed about how messed up it was that I had diabetes. She was also on the front foot regarding low-carb and would fight any doctor or anyone who spoke to me in a way that was condescending, rude, dismissive, etc. Just knowing she was there and that I could ask for help means so much to me and it’s helped me feel empowered to run my own race and do what is in my best interest.” – Gemma B.

“I wish they were involved. I was 9 when I was diagnosed and I felt really alone. Ask my mother about insulin and she will say she doesn’t know a thing about it. Plus she always told me I couldn’t have kids cause I have diabetes. Another lie, I met many type 1 ladies having 2-4 kids. Just focus on the positivity! As parents get involved and show you care! Communicate with your kids on their food choices, what activities they plan, double check they have everything, It’s great to get involved as a team.” – G.C.

“I wish they would have tightened up my diet a bit by feeding me fewer carbs but the dieticians and endos in the 90s told them I needed x amount per meal or I would die so they did what they thought they had to do. Eventually, they stopped listening though. All in all, they did a great job.” – C.S.

“All I can say is I wish they had found Dr. Bernstein and his methods. There is a lot I wish, but that is the biggest one!” – R.M.

“I liked that they sent me to a diabetes camp. That’s where I learned how to take of myself.” – Sally C.

“I’m grateful they let me be in charge and stay independent instead of micro-managing. I wish they had been more willing to learn about better control and nutrition. Although few doctors I’ve ever had were much help there so my parents were just going along with what they were told. I learned how to get better control in my late 20s through my own research and worry about the long-term damage that’s already been done. I’m now trying to help my parents take better care of their own health problems through nutrition and a healthier lifestyle.” – Melissa S.

“Even though I couldn’t see it then, my mom gave me the space I needed as a teenager to make mistakes and learn. She must have been so anxious by my behavior and I feel bad for that. But she supported me and set me up with everything I needed to become successful as an adult. She cheers me on now and I hope she knows I’m only doing so well because of her.” – Kelsey S.

“I was 12 when I was diagnosed and my parents did what they were told– just dose for the high-carb meals. Well, here I am at 30 years old with diabetic retinopathy that caused swelling when I was pregnant and I had to get injections and lasers in my eye which was super painful. I also have peripheral neuropathy so that is fun too. I eat low-carb/keto now to avoid spikes the best I can.” – A.R.

“They did a great job at encouraging me to embrace being diabetic, without it being something I needed to hide or feel quiet/embarrassed about. My mom brought a lot of enthusiasm into my diabetes management. Diabetes just became to me this interesting fun tidbit I could share with others and never saw it as something that reduced my value as a person. However, they did not make mental health support a priority, not giving me viable options which I needed as I had a severe needle phobia. It took me about 6 years after diagnosis to do my first injection, with upwards of 10 hours each week since diagnosis working on forcing myself to give a shot before I succeeded. And it wasn’t until 4-5 years after that, before it became “no big deal to me” It scares me to think I could have become on of those young diabetics that rarely take insulin because they wouldn’t acknowledge how serious my phobia was.” – A.A.

“I always felt empowered to manage this disease on my own from an early age. They never pushed but followed my cues and let me take over when I was ready. They did a great balancing act and I look at all the parents now in our community and my hats go off to you. You are all doing an incredible job.” – Matt. F.

“I felt like my disease wasn’t spoken about in front of others. It bothered me since it still always existed even in those moments. It gave me a huge complex about my disease and led me to many social issues down the road since I felt ashamed. I recommend talking freely about your child’s condition and never make them feel like they should hide it! They will have a much healthier outlook on their disease and that will translate to many other aspects of their life.” – V.V.

“Stay positive! Be there to listen! Educate yourselves and never settle for a doctor that you aren’t absolutely thrilled with. Find a doctor that both you and your child feel comfortable with. It may take time but it will be worth the wait for a much better experience for you both.” – Nicole M.

I hope the advice from members of our community helps you navigate your role as a parent of a type 1 child. Remember, every child is different and every situation is unique. Communicate with your child and do what works best for you, your child and your family.

Did you grow up living with type 1 diabetes? Do you have any advice to give parents raising a  child living with type 1 diabetes? Please share and comment below!

Source: diabetesdaily.com

Mommy Beeps: Parenting as a Type 1

This content originally appeared on Beyond Type 1. Republished with permission.

By Kim Baillieul

A few years ago, I sat at a park while my then two-year-old son played on the playground. A wave of dizziness fell over me right as I felt my continuous glucose monitor (CGM) start beeping. One, two, three – three beeps, confirming the low blood sugar I suspected.

Instinctively, I reached into my purse and grabbed the juice box floating among the loose change and used test strips. Of course, my son’s innate ability to sense whenever I have a sweet treat also kicked in, and the next thing I saw were his big, blue eyes fixated on my hand.

“Mommy, can I have your juice box?”

Sure, my sugar had dropped in front of my son before, but this was the first time I had no distraction for him – no alternative snack, no books to read. Most importantly, it was the first time he asked me to share. I shook my head and told him no, but he persisted.

“Mommy, pretty please, can I have your juice box?”

My mind went blank.

How do you explain to a toddler that your juice box is literally keeping you alive?

What I Was Told

For years – even when I was still a child myself – I was cautioned about pregnancy. At 16 years old, my endocrinologist painted daunting pictures of a hypothetical future high-risk pregnancy: weekly doctor’s visits, insanely tight control, constant monitoring. A massive list of things that could go wrong. All of this became my reality over a decade later when I became pregnant with my son.

My high-risk pregnancy with him had overall, gone well, partially thanks to the hard work I put in to maintain a 5.1% average A1C, and partially thanks to luck. I was prepared for the extra scans. I was prepared for the drastic insulin changes. I was prepared for the constant vigilance. I was prepared for what could go wrong.

However, nothing prepared me for how to explain my type 1 diabetes (T1D) to my child. Or why suddenly, at this moment, I couldn’t share a simple juice box. Frankly, I was so dizzy, I couldn’t even get up off the bench.

“I’m sorry sweetheart, I can’t share. This juice box is mommy’s medicine.”

Later, after my sugars were stable, I thought about how to talk to my child about my chronic illness and the scope of what he needed to know. I wanted to achieve a balance – somewhere between knowing enough to be empowered but not so much that he’d become anxious; enough for him to understand what I was doing, but not enough for him to feel responsible for it himself.

All my life I had worked to overcome and ‘beat’ my diabetes, to not let it stop me, you know, upholding the usual mantras of strength. However, as I pondered how to talk to my kids about my type 1, I had to set that all aside. Pride had no place here.

The conversation remained informal, but honest.

Understand that mama’s body doesn’t work the way most other people’s do… I’m not sick, but it can make me feel sick sometimes… This is my insulin pump… This lancet is sharp, please don’t ever touch it.

He had a lot of questions.

Yes, Mommy beeps!… No, you won’t get it when I cough… Yes, even if I forget to cover my mouth… Yes, I can eat most anything as long as I’m careful… Yes, even ketchup… Yes, even ice cream… Yes, even ketchup ice cream – wait, that’s gross!

We both erupted in giggles.

A Universal Struggle

One of the beautiful things about the type 1 community is knowing you’re not alone. As I reflected on this intentional conversation, one of the first ‘growing up’ discussions I had with my son, I realized I’m not likely alone in facing this. Turns out, I wasn’t – the Parents with type 1 community was peppered with struggling T1D parents facing the same hurdle. When I looked for resources, I didn’t find anything quite suitable for a type 1 parent.

Throughout my son’s toddlerhood, I captured my efforts in a children’s book I wrote called “Mommy Beeps: A book for children who love a type 1 diabetic.” It was a passion project of mine to provide a resource that didn’t otherwise exist, and hopefully help another family lessen the mental gymnastics of explaining type 1 diabetes to a child who doesn’t have it themselves. Every page is personal – down to the angry T1D on the phone dealing with a denied insurance claim. Because that is reality. Diabetes isn’t just about the finger pricks and injections – the medical and insurance logistics can be just as heavy. Extra doctor’s appointments, tracking of supplies, prescription refills – it all took time away from playing with blocks, giggling on the floor, or reading “Goodnight Moon” for the third time on a given evening.

As for my son, he took to my carefully crafted conversation well – and all of the impromptu ones that followed. Once, after a particularly harrowing high sugar, we planned a library visit to check out some books about the body, so he could find the “piece of Mama that doesn’t work.” We never made it to that page, though, because he was too fascinated by more amusing parts of the body (the toilet humor sure does start young).

A few years later, I braved the high-risk pregnancy world again and came out with a second little boy. The first time my type 1 diabetes interrupted our playing with trains, I talked to him, too. He shrugged it off and kept the train on its way to the station.

Later that night, he leaned into me. Pointing to my stomach, he exclaimed, “Mama’s Dexcom! I kiss it.” Clearly, something stuck in our conversation earlier that day. And I will take any win I can get.

They won’t know any other way, this will be their normal. And really, that’s a beautiful thing, because the T1D community is now just a little bigger.

Find out more about “Mommy Beeps” here.

Source: diabetesdaily.com

Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

Source: diabetesdaily.com

The World’s Worst Diabetes Mom: A Book Review

This content originally appeared on Beyond Type 1. Republished with permission.

By Alexi Melvin

Familiar Face

If you have been an active (or even not so active) follower of the type 1 diabetes (T1D) online community in the past few years, you have likely heard of Stacey Simms. Stacey is a radio host, T1D mom and blogger turned host of the popular podcast Diabetes Connections.

But recently, she’s added a new title to her repertoire: author. Her new book, “The World’s Worst Diabetes Mom,” is currently available for pre-order.

“This isn’t the book I set out to write,” Stacey immediately notes in the introduction. What was initially intended to be a book based on past blog posts turned into something much more unique when measured against other diabetes-related books that came before this one. After an offensive comment made against her parenting skills on social media, Stacey realized that she needed to write a book that acknowledges not just the T1D successes in life, but perhaps moments of pure screw-up that all who deal with diabetes know too well.

This is exactly what Stacey’s book does — and beautifully so. “The World’s Worst Diabetes Mom” does not glamorize the life of a parent of a child with type 1 diabetes or the struggles of a child. The book, in a way, celebrates that the idea of perfection is simply not a “thing” that can be attained while managing type 1 diabetes. Stacey is unapologetic and honest about the lessons she has learned as a T1D parent in a way that makes the reader — whether a parent themselves or a person with type 1 recalling their own early experiences — feel a lot less alone.

Book Review

Image source: Beyond Type 1

Stacey’s charmingly relatable book is organized into chapters based on type 1 milestones in her family’s life and other applicable issues such as: The First Night Home, Pump Start, On-the-Road Adventures, Summer Camp and Social Media Support. The T1D mom takes good care to emphasize that her opinions and experiences are not to be taken as medical advice, and she even includes “Ask your doctor” sections with helpful tips for what to address with your doctor with regard to each preceding chapter.

What Makes It Enjoyable

Although there are many stories and perspectives from people who have been diagnosed with type 1 diabetes available to us today, this book is an important window into the somewhat unexplored life of a T1D caregiver.

Every parent with a child who has type 1 diabetes will undoubtedly remember instances exactly like, or at least very similar to, the ones that Stacey recalls in each of these chapters about learning to manage her son Benny’s T1D, who was diagnosed just before he turned 2. And, even if the reader’s child was diagnosed at a much later age, the emotions that tie into each story – i.e. feelings of inadequacy or failure but ultimately becoming stronger for it – will resonate hugely.

Although the book is written by a T1D parent, people who have type 1 themselves will likely relate to the many moments of confusion and frustration, and will appreciate Stacey’s consistent ability to laugh along the way while always taking the topics seriously.

In this day and age where social media status reigns supreme even in the T1D realm, it is refreshing to read a book that encourages parents, caregivers and T1Ds themselves to resist the pressure to get it right every time. Stacey’s book is hinged on the idea that life is a journey, and that there will be bumps, and that regardless of how many bumps, it is your road to navigate. It’s about the journey.

About the Author:

Stacey Simms hosts the award‐winning podcast “Diabetes Connections,” after having hosted “Charlotte’s Morning News” radio show for many years. She has been named one of Diabetes Forecast’s People to Know, the Charlotte Business Journal’s 40 Under 40, and Mecklenburg Times’ 50 Most Influential Women. She lives near Charlotte, North Carolina, with her husband, two children, and their dog, Freckles.

Source: diabetesdaily.com

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