Woo Hoo first Guest Post – Cassie Giesberg.
You may recall another of Cassie’s guest posts on Sugar’s the Bitch not me – if not go there now and check it out – I’ll wait.
So here’s the deal. I started this blog first to clear my head. Siphon my thoughts into a pensieve – as Dumbledore would say (see I Write Because from 4/4/12). It has helped me a great deal to share my thoughts, concerns, successes and stories. What has helped more is how I’ve become so connected in the Diabetes Online Community via Twitter. I have met (both in person and online) some of the most fabulous people in the DOC. In the last 5 years since SugarBoys diagnosis I have come to realize that people with diabetes and parents with diabetes really and truly are sweeter (yes it’s a pun – but it is true.) One of those dfabulous people I have met is Cassie Giesberg, CDE (certified diabetes educator) extraordinaire. My children have had the fortunate luck to be seen by dear Cassie. I trust everything she says and so as a parent of 2 children with diabetes I asked her to write a guest post with advice to parents of children with diabetes. I am grateful she has provided so much valuable information that I can share with you.
Hi there! I’m Cassie Giesberg, and I’ve been a member of the T1 club for almost 29 years; I was diagnosed with Type 1 Diabetes when I was 17 months old. Essentially, I don’t remember notbeing diabetic. However, I do remember what it was like to grow up with diabetes. Depending on who you ask, my experience probably wasn’t that different from anyone else’s. However—because we diabetics don’t come with an owner’s manual—I wanted to share parts of my experience so that you can have an understanding of what it’s like to live with diabetes as a child. Hopefully, my experience will give you some ideas on how to be successful in helping your child with diabetes be a confident, independent adult with diabetes.
Like I said, I practically grew up with diabetes. What that meant for me was that my mom was responsible for my care for a really long time. With that being said, I think that she finally got to a point where was tired—particularly when she was so afraid of my diabetes and what that could mean for me in the first place. When I was ten years old, my mom sent me to diabetes camp. Right before I went, she said to me, “I can’t wait until you come back from camp. Then, this diabetes is all yours”
I’m sure that sounds appalling to most of you. But it’s a statement I’ve heard so many times in my career as a certified diabetes educator. Think about it: diabetes is a full-time job, except there’s no vacation or weekends off. That would be tiring for anyone. Remember that, because it’s going to come up again later.
I really should point out that my mother did the best she could with what she knew and what she had. She was a single parent on a below-poverty income, paying for all my diabetes supplies out-of-pocket; she never let me go without, often making sacrifices so that I would have what I needed. I hope that you’re realizing that she did a lot of things right. And believe it or not, you probably are, too.
I did want to offer up a list of dos and don’ts based on my experience. You will probably have your own to add, and that’s fine, too.
· Doremember that diabetes—like many other things in life—is a marathon. If you were running a marathon, would you run as hard and fast as you can in order to win? Of course not! You would sprint and pace yourself so that you can successfully finish. With diabetes, you have to remember to take everything one step at a time, one day at a time. If you spend your time trying to prevent every worst-case-scenario, you’re going to wear yourself out pretty quickly. If you take your time, chances are very good those worst-case scenarios will never happen. That brings me to my next point.
· Doremember that EVERYTHING IN DIABETES IS FIXABLE!!! If you see a high blood sugar, treat it with insulin per your doctor’s recommendations. You are going to see high and low blood sugars from time to time—if you didn’t, your child wouldn’t have diabetes. If you see a low blood sugar, treat it using the Rule of 15. If you treat these things in a timely manner, you can prevent those scenarios that you may be afraid of, as well as complications.
· Do help your child feel as normal as possible. For me, that was a little easier because I thought that was the way things were. In one example from my own experience, my mom did help me by talking to my teachers at school and convincing them to let me talk to my classmates about diabetes and what that meant; I also showed them what taking a blood sugar and a shot (using a doll) looked like. From kindergarten all the way through middle school, my class learned about my diabetes and what to look for to remind me to go to the nurse. They grew up with diabetes just like I did, and didn’t treat me at all like a “freak”. I was just one of their friends who did everything they did, but sometimes had to do some extra things.
· Do help your child become as independent as possible. There isn’t a “set” age for when this should happen, but when your child expresses interest in doing diabetes care, let them do what they are capable of, stepping in when necessary (i.e.: manipulation of equipment, skill/technique). Don’t be afraid to observe, and resume care if necessary (see below).
· Do send your child to diabetes camp if you have the opportunity. Even though I wasn’t treated any differently, I knew that I was the only kid in my school that had to take shots and poke her fingers. Going to diabetes camp meant the world to me—and it opened up a new world for me. At meal times, we all had to test our blood sugars and take our shots. In fact, I learned to give my shots all by myself at camp. We all had our snacks and meals at the same time. However, we had a lot of fun, too. In fact, I had so much fun and learned so much about diabetes, that I had decided at camp that I wanted to be a diabetes educator when I grew up. I went home with a new sense of confidence and independence that I had never had before.
· Do allow your child to grieve their diabetes. Being diagnosed with a chronic condition feels like a loss—a loss of security, independence, and even confidence. Allow your child time to grieve this; it’s a lot healthier if they do. Remember that it’s what you do next that counts. If your child decides to “give up”, then step in to help them do their diabetes care so that they know life goes on and that they have a teammate.
· Don’t allow the blood sugar or a1c to be a direct judgment of you or your child. Remember that these numbers are a snapshot in time, and whatever they are, they can be fixed if they’re not ideal. Don’t look at these numbers as “good” or “bad”. Think of them as “in range” or “out of range”. Sure, you want that three-month average to be 7 or below (barring too many low blood sugars), but that can easily be done if you fix those out-of-range blood sugars in real time. If you constantly remind them of how “bad” their numbers are, that will set them up for failure. Your kids don’t want to disappoint you and if you remind them how much they are, chances are very good that they’ll stop being honest with you about their numbers just so they don’t disappoint you.
· Don’t constantly remind them of what they can’t have or do. Diabetic kids already feel like there are a lot of things that they can’t do or have. In reality, there isn’t anything they can’t reasonably do or have. You and your child will be a lot more successful if you remind them of what they can do or have so that they won’t feel any more ostracized than they probably already do.
· Don’t be afraid to punish your child if they are independent with their diabetes care, and they don’t do it. All too often, I hear, “But I don’t want to punish them for having diabetes.” You’re not. If you told your child to clean their room and they didn’t, what would you do? You would punish them. This is the same thing—except the stakes are a lot higher.
· Don’t be afraid to step in and resume diabetes care if your child isn’t doing it. If they’re not doing their care, then they’re showing you that they can’t handle it. Remember, diabetes is a full-time job without weekends off or vacations. The best thing you can do is to give your child a “vacation”. Step in and help with their care. It will be good for you, too, because it will help you keep your skills up in case you have to do all the care for whatever reason.
· Don’t be afraid to send your child to counseling if they are having trouble dealing with their diagnosis. People with chronic conditions have a 95% chance of developing depression. Kids aren’t programmed knowing how to deal with that, and professional assistance can only help by arming them—and you—with the tools to deal with this as it arises. Your child will be a lot more successful if they develop healthy coping mechanisms.
So there you have it. These are the main things I have dealt with in either my personal or professional life. As I said before, you’re more than welcome to add your own, because I guarantee you that I haven’t covered everything. Some of these may be hard to swallow, and they may not work for everyone, but that’s okay. However, I hope that hearing it from someone who grew up with diabetes make these things a little more valid for you. Good luck and good health!