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

One of the Lucky Ones: A Timely Diabetes Diagnosis

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

By Mila Ferrer

How It Happened

Fourteen years ago, my youngest son was diagnosed with type 1 diabetes. He had all the classic symptoms. But neither my husband nor I knew that all the signs my son showed meant that our lives would change drastically very soon. I am pretty observant and I did notice that my son was urinating more frequently, but I thought it was just a urinary tract infection. Fortunately, my son’s pediatrician at that time was a friend of the family, and on top of that, her sister has lived with type 1 diabetes since she was little, so she had personal experience with it. I took the liberty of calling her doctor on her cell phone while she was on vacation, and thankfully, she answered the call right away.

When I told her about the symptoms my son had, she immediately said, “I hope I am wrong, but he has all the symptoms of type 1 diabetes. As soon as the pediatric emergency clinic opens, take him in and ask for a blood sugar test. Call me when you have the results.” I was skeptical and baffled, and I told my husband what the doctor had said; I went online to read about type 1 diabetes, but I still did not think that would be the diagnosis.

As soon as the emergency clinic opened, we took Jaime in, we discussed the symptoms with them, and told them about my conversation with the pediatrician. They checked his blood glucose level, and indeed the correct diagnosis was type 1 diabetes.

Kid

Image source: Beyond Type 1

The instructions were very straight forward: “You have one hour to go home and get the necessary clothing for a safe hospitalization.” We left the urgent care with a referral to the pediatric hospital, with our hearts pounding out of our chests and thousands of questions. Jaime was seen by the doctor quickly once we got to the hospital. The next day, we started diabetes education, and two days later, we went home.

Counting Our Blessings

Although my son’s diagnosis was surprising, I confess it was not traumatic, and although we had doubts and fears, we were able to resume our new life quite quickly. That experience led me to believe that all type 1 diabetes diagnoses in children were like ours. What I did not know is that that was very far from reality. I assumed that all primary physicians could identify the symptoms and begin the necessary treatment and education to stabilize the patient’s glucose.

The sad reality is that I was very wrong and once I joined the online diabetes community, I learned about the stories of misdiagnosis. I could not believe it! From that moment on, I could not help but thank my son’s pediatrician for sounding the alarm and telling us what steps we needed to follow. From that moment on, whenever I had the opportunity to educate others about the symptoms of type 1 diabetes, I did not hesitate to do so. As parents, we know the signs of many common illnesses and can quickly identify them, but I had never heard of type 1 diabetes symptoms.

That is why I am so passionate and why I value Beyond Type 1’s Warning Signs Awareness Campaign so much, as it seeks to help identify new type 1 diabetes diagnoses and prevent diabetic ketoacidosis (DKA) from occurring. I feel very fortunate that my son was not in DKA and that his diagnosis had no complications.

Even if type 1 diabetes has already reached your home, I want to invite you to help us by educating your friends and family. We must be observant, educated, and proactive parents, and if the symptoms of type 1 diabetes show up at any time, it is necessary to seek medical help right away. If your story is like mine, you should feel fortunate and be thankful to the healthcare professional, friend or whoever guided you. Join our efforts, share the #T1DWarningSigns and let’s prevent misdiagnosis or missed diagnoses from putting the lives of others at risk.

Learn more about our Warning Signs Awareness Campaign and help prevent missed diagnoses and incidences of DKA at diagnosis. Want to get involved now? Sign up to receive a free awareness kit here.

Source: diabetesdaily.com

Four Steps to Managing Your Fear When Raising a Child with Type 1 Diabetes

By Bonnie O’Neil

The fall chill in the air deepens as the leaves begin their inevitable eruption into glorious color. Children squeal with delight at the prospect of being frightened by houses decked out with ghosts, witches on broomsticks, and ghoulish creatures. This is October, the month when a little Halloween fear can actually be fun.

But, for most of us, fear is not a matter of child’s play. We can’t easily tuck away our fears like so many Halloween decorations, simply exchanging them for thoughts of thanksgiving because the calendar says we should.

When my son was diagnosed with type 1 diabetes at age five, I thought my greatest fear in managing his type 1 diabetes (T1D) would be injecting him with insulin. I would soon discover there were far greater fears awaiting me as his caregiver.

“What if his blood sugar drops precipitously low while I’m sleeping?”

“What if I can’t control his ketones and blood sugars when he has a stomach virus?”

“What if I don’t manage his blood sugars tightly enough when he’s young? What does that mean for his long-term health?”

These are the fears shared by every T1D parent within our collective community when the world is moving in its proper orbit. But these are not normal days and the world seems to be spinning in ways that leave us feeling particularly out of control. Living with the restrictions of the pandemic for eight long months now, our fears have taken on an additional dimension.

“How can I keep my child safe from getting COVID?”

“What if my child gets COVID? What will that mean for him?”

“When will it be safe for my child to resume her normal activities like school, work, and play?”

I know fear all too well. Despising the consequences of yielding to fear, I nevertheless fall prey to its temptations and cling to it as I would a best friend. I carry fear with me as a fire between my temples, a tornado deep in my gut. Awash with fear, it’s easy to descend from the present into an imagined world of what-ifs.

Fear is a cloaked villain, lurking in the shadowlands of our minds. Catching us by surprise, fear for our child’s safety can overwhelm our thoughts, locking us in repeating mental loops. Once that unseen villain kidnaps our thoughts, how do we escape his suffocating stranglehold? Next time the fear villain shows up unbidden, try these steps to send him packing.

1. Acknowledge Your Fear in Managing Your Child’s T1D

So often we feel the emotion without taking the time to name it. We hope by ignoring it, it will go away, when actually, the opposite is true. The more we ignore fear, the greater influence it has over us. Instead of ignoring fear, face it. Sit with it. Name its source by identifying the roots of your fear. You may be surprised to discover you’ve carried this same type of fear for a long time, even before your child’s diagnosis. Talk about your fears with a trusted friend, a therapist, or a counselor.

2. Lean on Meditation or Prayer When Fear Rises up and Feels Beyond Your Control

When we’re deeply afraid, we naturally experience an accelerated heart rate because our body’s sympathetic nervous system activates its natural defensive mechanisms. Once put into motion, we experience increased pulse and breathing rates, elevated blood pressure, and tensed muscles. Intentionally breathing slowly and deeply activates the parasympathetic nervous system, calming the body by decreasing blood pressure, heart and breathing rates, and relaxing tense muscles. Deep breathing exercises associated with meditation and the slow breath prayers practiced in many faith traditions help calm our body when fear surges.

3. Stay Present

We fear what we suspect might happen in the future. When we stay grounded in the present, it’s harder for our thoughts to slip away into uncharted territory. Practicing centering prayer or mindfulness helps us grow in our ability to stay present and teaches us how to reel our thoughts back in if they begin to stray too far into what-if scenarios. When fear overwhelms you, take some time to focus on the present by repeating the word or phrase you use in mindfulness or centering prayer. Repeated slowly, in the rhythm of a deep in-breath followed by a deep out-breath, our heart rates slow, our minds settle, and we stay grounded in the present.

4. Practice Letting Go of Perfection

No one gets everything “right.” Making any decision involves trade-offs. You have an awesome responsibility in caring for your child’s chronic illness, but you can’t determine and control all outcomes affecting her. Some of us naturally have a higher desire for control than others do. If that’s you, remind yourself frequently that you’re doing the best you can, but ultimately, you’re not in control of all things. Releasing control is not a weakness; it could become your greatest strength. Give yourself permission to release control and then visualize yourself letting go.

And when fear rises up in the middle of the night, take a few deep breaths and allow your centering word to carry you back to the present, away from the fear.

Source: diabetesdaily.com

Diabetes Love Letter: An Ode to Mandi’s Late Parents

By Mandi Franklin

To my late parents:

It was the winter of 1990 and I was spending the week at my aunt and uncle’s house while my parents were chasing sunsets in the Caribbean. I loved sleepovers at their house – we would play “grocery store,” paint my fingernails, and stay up late.

This time was different…

“She’s drinking so much water. She can’t seem to quench her thirst,” my aunt said to my mother when she called to check on me.

I was so thirsty that I would climb on top of the bathroom sink and gulp water from the faucet like a parched cat. My aunt and uncle knew something was wrong.

Photo credit: Mandi Franklin

My parents caught the next flight home and I was rushed to Sinai Hospital in Baltimore, Maryland.

This is when the perfect world we once knew changed for me and my family.

“She has juvenile diabetes and we need to give her insulin,” explained the ER physician to my parents. Imagine hearing that your little, previously healthy 3-year-old now has a permanent disease that will need to be managed with multiple fingersticks and numerous injections daily.

Confused. Angry. Sad. Guilty. Numb. These are things that I am sure my parents felt at this moment.

Over the next few days, we learned how to cope with my new life with the help of the medical team, nurses, dietitians, child life specialists, and of course family support.

From that day on, my parents vowed to never treat me differently and promised that I would live a “normal” childhood.

Photo credit: Mandi Franklin

Looking back, I admire them for how they tackled this diagnosis and disease. I never felt like I couldn’t do something due to my illness. I was able to dance, play sports, go on vacations, and have sleepovers.

I have been living with type 1 diabetes for 29 years. There are days when I want to throw in the towel and say “OK diabetes, you win.” The other days are just like yours, except with a few extra pokes and a special ability to count carbohydrates.

My parents taught me to live my life and never let my disease get in the way. Because of this, I do what I love and continue to chase my dreams.

In conclusion, don’t ever give up.

Thank you, mom and dad, for raising me to be a strong, independent, resilient, goal-crusher who just happens to also have type 1 diabetes.

Love you always,

Mandi

More about the author on her website and Facebook Page.

Source: diabetesdaily.com

Letting Go of the Way Things Were

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

By Bonnie O’Neil

Familiar Territory

I was no stranger to type 1 diabetes when my son was diagnosed with the disease at age five. My sister has been living with type 1 diabetes (T1D) since she was sixteen years old, and my brother died as he was being diagnosed when he was just eight. I was born eighteen months after my brother’s death as the replacement for the child my parents had lost. I was born on the shadow side of grief, into a family desperately in need of hope.

When my son was diagnosed with T1D, I instinctively knew I had reached the end of an era and would forever mark time by Before Diagnosis and After Diagnosis. This disease was deeply personal to me and so I responded swiftly and deeply to its reappearance in the warp and weft of my family.

I was riddled with anger — at the disease, at God, at the universe. My fear — for my son’s safety and quality of life, and for the health of my other children — threatened to undo me. I discovered I had a deep need for control, yet control was more elusive now than ever before. I struggled with guilt, knowing T1D had passed to my son through me. I found myself experiencing deep jealousy, perhaps for the first time, over everyone whose life seemed easier, sweeter, less complicated than mine. Frequently, in that early season, my jealousy even turned to self-pity. I felt isolated and was constantly exhausted.

I learned about carb counting and sliding scales for dosing insulin. I learned about the effects of diet, exercise, and illness on blood sugars. I was prepared for how difficult T1D would be on my child, but nowhere in all the training was a forewarning about how hard it would be on me, his caregiver.

What we have been called to as parents of a child with T1D is hard and can leave us physically and emotionally drained. While it is my son who lives with type 1 diabetes, I discovered the disease also invaded me personally, and hasn’t left any single aspect of my life untouched or unaltered. Refusing to be ignored, it’s chiseled at the deepest parts of my being, forcing me to dig deeper for strength than I have ever needed to before.

T1D also seeped into every pore of my family, as I’m sure it has seeped into yours. It has brought additional challenges to my marriage. It has complicated my relationship with my son, as I struggle with being his mother and caregiver without being a hoverer. The weight of the disease has even affected my other children. Chronic illness is the great disrupter.

Releasing Control to Gain It

How can we hope to build emotionally healthy families in the midst of all the disruption that accompanies T1D? We must begin deep within ourselves as parents. We begin by recognizing our own pain and attending to it, rather than continuing to brush past it, hoping it will just go away.

Because it won’t.

If we don’t find healing for our unhealthy emotions, the muck will spill over and spiral out into the rest of our family. But, when we begin to tend to our own hearts, we create space for our wounds to heal, allowing the healing to spiral outward until gradually it touches every relationship within the family. Hope and healing begin with us.

The undoing of our captivity to fear and anger, mourning and brokenness, requires the relinquishing of our constant longing to live a different life. An easier life. A life where loving and care giving don’t hurt quite so much. To move beyond fear we must begin to accept what is. As long as we refuse to accept our new normal, fear will hold us in its grip. Acceptance allows us to face our fears, and once we face our fears, we can begin to deal with them. In accepting this disease, I acknowledge my son’s vulnerability and also my own.

But acceptance is hard, isn’t it? It requires us to do the difficult work of releasing control. Control is our need to influence and determine the outcomes of all situations affecting our life. Control is our attempt at ordering the world around us, and it’s our insistence that life conform to our view of how things should be. My son’s disease interrupted the carefully ordered world I had envisioned for my family. It shattered my expectations. It took away my control.

And when we lose control, it’s easy for anger to step in and take its place. We don’t like the unsettled feeling of being out of control. We prefer to walk on solid ground, yet this disease demands we embrace the shifting footing of uncertainty. I’ve learned though, that the only way forward is through the crucible of releasing control. To take hold of hope we have to release our lock-fisted grasp on the way we insist things should be. The way things once were.

A new hope can only be birthed out of our willingness to set aside our need for control, and to courageously begin to accept things as they now are.

This essay is a taste of the book Bonnie O’Neil is currently finishing writing for parents of a child with chronic illness. Through narrative and reflection, the book weaves a story of hope amidst the challenges of raising a child with T1D.

Source: diabetesdaily.com

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