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 not
being 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.
·
Do
remember 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.
·
Do
remember 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!
