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Gaining Diabetes Independence.

Bridging the gap between being a child with diabetes and being an adult with diabetes.I spent some time with some parents of kids with diabetes this week (more on that in short bit), but part of what we talked about was that transition between being a "child with diabetes" to an "adult with diabetes."  

One of the biggest milestones for me as a transitioning child was earning my driver's license.  I wanted to drive more than anything else.  I wanted that freedom and that ability to go where I wanted and when I wanted, without that awkward "waiting for mom to pick me up" moment.  But my parents and I talked about how driving with diabetes was a huge responsibility, and it was completely understood that if I screwed with my diabetes management intentionally, the car keys wouldn't be resting in my hot little hand.  As I matured and got adjusted to the constantly shifting levels of responsibility that were required of me, the torch of diabetes responsibility started becoming more and more predominantly MINE.  

Abby talked with a few people with diabetes in her community about making that jump from "under parents' care exclusively" to taking ownership.  The responses were varied, which made me wonder how different this transition is, family-to-family:

Ashley Napear  (22 years old, 18 years with diabetes)
I know for me growing up, my doctor told me that I was not allowed to have an insulin pump until I could take care of my diabetes which meant me doing everything. I know this is different now because pumps are being given to kids at younger ages, but this is how it happened for me

Dylan Hoots (18 years old, 8 years with diabetes)
I know that when I reached a certain age ... even as young as fourteen, I unintentionally may have pushed my parents away from taking care of me because in the back of my mind I wanted to be self reliant and be able to take care of the disease on my own, however, through that they eventually never asked me about it and it led to a lot of burnout. But I think every kid wants to be independent; it's especially different for children with diabetes because it can be such a dangerous disease.

Amanda Devens (20 years old, 14 years with diabetes)

It was a sort of process, slowly I started to realize that I needed to do it on my own, pricking my finger, then taking shots, and then pump sites. Because well there was one day when I was at school - my mother used to show up and prick my finger because I was too scared to - but this day she didn't show up, and I knew it had to be done, and so I did it. And realized that it wasn't really THAT bad! :)

Alissa Carberry (20 years old, 11 years with diabetes)
It was definitely a process- started slowly and it picked up. I was diagnosed when I was 9 and initially let my parents do EVERYTHING- but within a few years I realized I couldn't hang out with my friends or do any "normal things" that an eleven or twelve year old girl wanted to do because of the struggles of giving injections and carb-counting. My parents and I would work out ways to ease out of my dependency, such as me checking my sugars and carb counting on my own, but I had to tell them so that they could log it. Eventually I started doing everything and loved the independence that went with it, only when I went through burnout periods did they help or when I was ketonic (essentially when I hit a roadblock or diafails occurred) Once I went on the pump I was self sufficient … my dad still tells me that he has NO idea how to work my pump!

Melissa Moulton (20 years old, 10 years with diabetes)
For me it was a slow, gradual transition process. I went from my parents sending me on my way with pre-filled NPH/Regualar syringes, to leaving a filled Minimed 508 reservoir on the counter for me, to my mom occasionally scrolling though the numbers on my meter, to complete independence. It was definitely a give and take process, with me taking on more than I should have at times, and trying to push my parents away and them trying to take my diabetes back into their control. But hey, ten years later I'm doing just fine, so I think something in there went right :)

Alicia Miller (20 years old, 8 years with diabetes)
Diabetes was a bit of a shock to my growing up. I wasn't diagnosed until I was 12, so I wasn't really able to progress into my teen years and puberty until I had gained back the weight that DKA had taken from me. It was rather quick for me, I was giving myself shots within two months of my diagnosis (I had wanted to go to a sleepover and wouldn't be allowed if I wasn't doing them myself) and was on a pump within two years. I'm still adjusting to having diabetes in my life. I have gone from middle school, to high school, and now to college and traveling with it. I am still questioned with what I am doing when it comes to checking my blood sugars, pumping and using my sensor. My parents have always helped as much as I allowed them to, which wasn't much since I have been incredibly independent when it comes to my diabetes. I went to school, stayed after and hung out with friends, clubs etc. like everyone else because my parents trusted me, and my control and dedication to controlling my disease. I may not always have "perfect" blood sugars but I have managed to lower my AIC, keep my eyes in good shape and travel abroad without major issues with my diabetes.

Bethany Kinsey (23 years old, 18 years with diabetes)
For me it was more a psychological struggle of wills. Having had diabetes since the age of 5, things typically go one of two ways: either you don't learn to make the disease your own until college or some other cataclysmic event in life or you want full control by age 12. I preferred the latter of the two. I am generally a very independent person with everything I take on, so why not diabetes as well? However, my mom and I fought for years about my control-sadly, she and I handle stress and arguments very differently, so neither one of us were able to realize what the other person was going through until retrospect allowed us to see 20/20. I recommend taking baby steps instead of diving head first into the deep end as a pre teen/early teen. Diabetes is a BIG deal. Take all of the help you can get - just don't let that help smother you.

Abby Bayer (22 years old, 12 years with diabetes)
My mom never had much to do with the actually diabetes part, about 3 days after I got home from the hospital I was doing my own injections, carb counting, etc.  I was almost 11 years old and was not about to have my mother running my life (and she wouldn't let me sleep at friends houses until I proved myself).  The biggest transition that I'm still struggling with is the paperwork side.  Insurance companies hate me, and aren't shy about telling me so. Sometimes I'll get 2 shipments of insulin when I only wanted one, and then they won't send me more when I ask for it. I have about 5 boxes the size of a small house in my basement filled with expired strips and lancets because the company was sending me far too many without me asking. It's a hassle, and until I get my own insurance and have the whole situation under control, I'm going to rely on my mother to fight with those people in who-knows-where about what they think I really need.

When did you start taking control of your own diabetes?  And this question isn't just about children becoming adults.  This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit.  Taking ownership of diabetes isn't limited to kids who are growing up. 

When did you start to gain your diabetes independence?

Comments

Oh gosh, I think it was a progression of sorts, certain amounts of independence since I was first diagnosed at 6. Feeling "totally" independent may not have been until college but when I look back, it was a lot earlier.

Different for each of us....my parents allowed me to do what I wanted as a kid, just be a kid really, then a teenager etc etc. We discussed how Diabetes played a role and I just ran with it.

I love that I know every name on that list. You guys are amazing :)

This is actually a tough question... I was diagnosed at 6 and am now 25. For me, being very independent, I sort of forced my parents into giving me the reigns pretty young. So sometime in middle school I was doing everything on my own and my parents only really got involved during the doctor's appointments. This was NOT a good thing - I wasn't ready to be in charge of my own health but I was a closed book about all things diabetes and refused to let my parents in. However, I didn't really take ownership of D until recently when I had my own insurance for the first time, and was forced to take notice of cost and had to pay better attention. Also, unlike my parents, my boyfriend of the last few years was not willing to be shut out about any part of my life, especially D, and he has been a great source of motivation for being in control.

Since I was diagnosed at 22-years-old, I never had the opportunity to rely on my parents. My mom actually told me in the hospital, "I'm NOT going to give you your shots. You need to figure this out on your own." She did program my meter for me when I first got it because my eyes were still fuzzy from my DKA. And she checked my first couple of Lantus injections to make sure I was doing the correct (again, because my eyes were not all there). I've always been independent, so I imagine I would have always taken my diabetes for myself early on. But since I didn't have my parents (or anyone else) who knew about my diabetes management, I did feel very alone at times when I didn't know what to do. I figured it out, though. =)

With my endocrinologist, I was afraid to change anything with my management without his approval. I felt free from him when I told him I thought my insulin:carb ratio was too aggressive and he said, "Well then, reduce it. You don't need me to do that." That sliver of independence led me to get my Dexcom CGM all on my own, without asking him.

My son, age 20 with T1 for 13 years, starting testing his own sugars (with parents watching, of course) almost from the moment he was diagnosed. He loves technology and was fascinated by the meter. As for his injections, we drew up the insulin until he was about 12, but he used an Inject-Ease to administer the insulin (but his diabetes camp forbade the use of it). Our CDE told us from the start that we had to gradually relinquish control of his diabetes care, so that by the time he was 14, he was pretty much doing everything on his own, with input from us as needed.

Oh, this made me laugh: "This could be the moment when you realized you didn't need to check with your endocrinologist every time you tweaked your insulin doses a little bit."

It made me laugh because I basically realized that I was better at tweaking my insulin doses than the endo probably 2 months after Dx (granted, I was diagnosed very late, at 19). I'm still one of those people that gets a little defensive when the endo wants to change my basal rate based on 2 weeks of logbook data or something.

My daughter was dx'd at 8, 14 now. She gave herself a shot the first night in the hospital and ever since. Now she manages the pump and dexcom on her own and tells me when the supplies are running low. I was newly divorced and going back to work full time at the time of her dx, and I think her not wanting to add to my burdens factors in. Then, and now, I try to lessen her load, cleaning up d-trash, filling a cartridge occasionally, little things but I like to think they help. I love hearing from others on the topic of evolution. Thanks, Kerri.

My 9 yo daughter is just fast approaching the 3 year mark... from the beginning she did her own pokes within a few months she was doing her own injections... when we started pumping 6 mos after dx she did the button pushing (under supervision for all of course)...

Last year the sleep overs started, she has to check in with us and her cell must always be on... only once have we had to pick her up because of stubborn don't want to budge out of the 70s borderline lows...

I fear hormones... I fear teen rebellion... I fear burnout (for both of us)...

While she isn't completely independant yet, and I wouldn't expect her to be at this age, I hope that by including her in the process of everything along the way it will become second nature to her.

(Diagnosed age 9) now 29. I think everyone comes to the point that either Diabetes is going to control you or you have to control the diabetes. I didn't want it controlling me-so I took control. I never went through the I don't want to do this stage-because I knew that diabetes is a game of life. I give my shots like I am supposed to and check all the time. But I do not eat right-maybe one day I will master not eating all of the cookies in the jar! Diabetes is a way of life-and for me I'd rather have something like this that I can control rather than Cancer or Aids that you have no control over.

I was diagnosed at 16 so I pretty much took control from the very start. I wasn't good at it and didn't really realize until college when I went into Ketoacidosis my freshman year. So, I always had independence, but didn't decide to manage my independence until college.

I was diagnosed at the age of 4 and I’m 26 now. Like everyone else it was a process to independence. I think I started drawing up my own injections when I was in the first or second grade (I think I took that job over because one time my dad mixed up my regular and NPH doses, there was a panicked call to Children’s Hospital with that one). I didn't get the courage to inject myself until the summer after third grade when I went to Clara Barton Camp and everyone else was doing it. I think the main reason I learned how to do everything on my own was to sleep over friends' houses. I decided to go to boarding school for high school so I had to be completely independent by 14. My family has always been there for moral support. My mom wanted me to be independent with the disease because she had family members that died from diabetes because their parents did everything for them and once they were out on their own they didn't know how to take care of themselves.

I was diagnosed a few months after turning 11. I had read all about type 1 diabetes already because my sister had just been diagnosed with it at age 3 and I wanted to be able to help out with her. So within a week of diagnosis I was doing everything on my own. My parents did hover over all I did just to make sure I was doing everything right and to learn all they could but, it seemed natural to me to be in charge of things. I made tons of mistakes and there were alot of trial and errors but, at least I learned a ton. I think everyone is different and some people need more parental guidance than others through the transition years. And everyone needs support no matter how old.

Kerry -
Great post! I think progression is a key word in this. It's a learning process for all that takes time. I was dx'd at 2 1/2 and my brother at 2. It took time for us to become independent. The teen years were tough. I was a complete rebel and the learning process was a bit slower, but now... 38 years Type 1... I can say I'm living and thriving with it! Just remember - It's important to learn something new each day.

WHAT?!?!?!?!?

You mean to tell me I have to give over control? I have to let her grow up? I have to hand her the D reigns one day?

I think I'm feeling lightheaded.

Thank goodness for those who have gone before me ... through them, I hope to soak up as much real life knowledge as possible.

My sone was diagnosed when he was 10. He is now 13 3/4 years old. In the hospital they told him that while they wished they didn't have to say this because then he wouldn't be there with diabetes, that he was the 'perfect' age because he was old enough to understand and young enough to be compliant. During all of the initial training, they asked him all of the questions and made sure my wife and I understood. Initially, we checked that he had drawn the correct dose of insulin, and he initailly needed help injecting into the back of his arm, but quickly figured it out. He is now on a pump (7th person nationally with a Ping) and does the day to day stuff himself, and He and I weekly look at the big picture for trands and possible adjustments. One day we went to a seminar about family involvement, and we were amazed at the number of familys there with children who were now 10 to 12, and had been dianosed as babies, and the parents were still holding on to the diabetes things and not transfering any responsibility. I remember one dad saying that his daughter could only go on sleep overs if the parents gave him a key or legt the door unlocked so he could go over after midnight and go in and taker her BG. Since dave has always accepted his diabetes as a 'new' normal, we have strived to allow him independence. He sleeps over friends houses and when he comes home late the next day, we will ask him about BG checks and check the meter. Not quite sure what we will do in a few years when he can drive.

I was diagnosed at 23, already moved out of my parents' house. But my mom did come with me to my initial endo appt and since I was under their insurance until I was almost 26, they took care of a lot of the insurance battles. They have no idea how to work my pump, not even sure my husband knows. Never mind the sensor. I think they could figure out how to test me, or even give an injection if they needed to. Not only did I never live with them when I was diagnosed, I live 150 miles away so they don't even see the day to day stuff I do. My ILs do, but they live in a fantasty world so they don't always get it.

I was diagnosed a little over 7 months ago, at the age of 30, and I quickly grew SICK AND TIRED of having to clear everything through either my CDE or endo. So I finally went to an endo appointment with all of this info I'd learned about making adjustments on my own and was ready to FIGHT FOR IT! As soon as I mentioned it, she was like, "Oh, of course!!!" And I was like, "Oh. That was easy."

:)

I'd jsut felt so "under the control" of these medical professionals, that I hadn't felt like they'd give me "clearance" to make changes on my own.

What do you do if the teen doesn't want independence? My son is not very interested in managing his diabetes. He depends on reminders to do nearly all his tasks -- he does them williningly, but rarely remembers to test, bolus, change his site, etc. He is going to be a mess when he goes away to college in a couple of years.

I think I "thought" I was independent from the moment I was diagnosed, at age 15. Obviously, being that age helped me understand everything well and I was already asserting my independence at the point, so it was natural for me to "do everything" w/ my diabetes myself at that point. My parents would occasionally check up on me, but really they were my biggest cheerleaders, there through the really frustrating times. However, I think I really became completely "independent" on a whole new level when I began to deal with my own insurance 3 years ago. That was a whole new world of frustration that I never realized my mom dealt with. Parents, it might be wise for you to "prepare" your D-kids for what happens when they have to handle insurance on their own. It rocked my world.

Kerrie, I received my 50 year medal last week. One of the letters that was in my packet that I received from Joslin had this request asking me to share my story,"Memories of events from the time of diagnosis and childhood, as well as personal successes and triumphs are important and note-worthy".
I do not have childhood memories. I left the hospital on February 18,1961, my 21st birthday. I was in charge of my diabetes from day one. My mother never played a role in the management of my diabetes. In studying the lives of those of us with fifty years, it would be interesting how many people had to do self-management from the time they were discharged from the hospital. How did that affect their management in order to live fifty years with the disease? No parents reminding them to do this or that. It will be interesting to discuss this with the wonderful people at Joslin when I go to Boston next year.

Normally when I comment on your blog, I like to say whatever it is that comes to my mind. But this one definitely got me thinking, and I've been reading it all day.

I was three when I was diagnosed, and 21 years later, I "cut" my last string. The first part of my independence came on my 4th birthday (~2 months after diagnosis) when I started doing my poke all by myself. In elementary school, I started drawing up my own insulin occasionally. I had to use the magnet thing on the insulin bottle though, because I couldn't hold the bottle and syringe at the same time (I was a teeny child, with teeny hands). When I got to camp as an 8 year old, I could magically draw up my own insulin and give my shot. As I grew older, I gradually gained more and more independence. I know that I got my driver's license in March 2002, before my pump, but I know that I got my pump March 16, 2002. After I got the pump, I quickly gained more and more independence. My parents don't know the ins and outs of it, but they still always ask me what my BGs are. And this year, getting a job, getting insurance, setting up new doctors, and rescheduling appointments and making sure my pump is still covered, these are the things that make me feel that now, as a 25 year old, I've gained my independence. (But independence is so much easier when you know you have people to fall back on too.)

I was pretty independent from the day I was diagnosed 21 years ago (10 at the time). The hospital had me practice giving shots to oranges and then I progressed to myself within a day or two. Quick transition from non-diabetic to diabetic but in the end I think it gave me more ownership and independence as I grew up.

Nice post. I was diagnosed at age 12 and also never let my parents step in..probably a big mistake because I am still, 18 years later, working to figure things out. its been a rough ride and would have been nice to have a little help in the beginning.
thanks for sharing!!

I was diagnosed at 18, fall of my freshman year of college. My parents gave me my shots for the fist two weeks,(I was SCARED to death of needles!) My dad, a doctor, said that I needed to do everything myself if I wanted to go back to college. I gave myself my first shot by dinner! I wanted to be independent. My parents were wonderful at allowing me to take control of my diabetes. 30 years later, they still worry but they know that they gave me the skills to live and accept life with diabetes.

I was diagnosed at age 5, had diabetes for 22yrs. I took over doing my own blood tests first, perhaps at about age 8 - 9. (late I know, but I was happy to have mum or dad conveniently do stuff for me!).

I started doing my own injections shortly after that, but because I was on a schedule that didn't require ANY injections during school time, I didn't have any reason to do it quickly. So I was a late bloomer, doing my own injections at about 9 - 10. This becomes understandable when you realise that the first month of injections my parents had to give me - they had to SIT on me to get me to hold still enough! :P

The one thing that took me the longest was definitely working out the correct dose of insulin. I had to learn to add up the actrapid and the monotard, and I really struggled with addition in my head! It was only once my Aunt suggested I write the sums down that I felt the confidence to take over everything.

I was diagnosed late - 28. I was living away from home in the city, had my own insurance. Well, I was 28! from the start I did my "own thing". My Endo gave me my initial "doses", but from the days in hospital I was on the net gaining knowledge, and buying books online. I changed Endos, and my new one said that I only really needed her for prescriptions it seemed! Even when I switched to the pump - had a short training session, but had already equipped myself with enough knowledge prior, that I think I may have known a bit more than the trainer did. I connected my first CGM myself, with no supervision or assistance, same with my new pump.

isn't this what it's all about, raising a kid with Type 1 to be independent. I think it's thrilling, frankly. To see my gal gain control, confidence and to think - I played a small role in that. That's the bees knees.
My goal as her mom is for her to feel confident, know as much as possible about Type 1 and her body and diabetes and living with Type 1, then to give up the control so that she is in control and I stand behind her - urging her onward, upward, So that one day, she can fly. The whole wind beneath her wings type of stuff, I know, but it's true, so very true.
This is good stuff Kerri, I would love to hear more about kids diagnosed young, who's parents did it well, so that I may learn, in turn, to do well by my own gal.

I was diagnosed at age 4, 33 years ago. I left hospital doing my own injections (my mum had to draw up until my hands were big enough) and my own urine tests. Did my own blood tests from the point they came out. I was a very independent child...and better at maths than my mother ;-)

I was diagnosed at age 16, and took on the entire responsibility for my Type I diabetes immediately. There were no blood glucose meters back then, so I was scared of driving. I passed the test for my license, but was paranoid about driving because (on primitive insulins like Regular and NPH) my BGs were everywhere. When I graduated college, I HAD to start driving to get a job, so I would drink a glass of orange juice before getting behind the wheel of the car!

What an interesting post! I have found it so eye-opening to read the experiences from those of you diagnosed from a very young age up until puberty. I was diagnosed almost 3 years ago at the age of 27 so I was pushed head-first into self-care and treatment. I sometimes wonder where I gathered the strength but I think we find it within ourselves when we have no other option and we really care enough about ourselves to move forward.

Thank you for posting this topic, Kerri. You've been such a great support to me over the course of my diagnosis and life with T1.

Thanks for this terrific post, Kerri, and thanks everyone for the great comments. We still do site changes for our 11 year old Son, and he insists on them being in his butt. I'm sure that will change in the not too distant future. We have tried to give him ever-increasing responsibility for the care of his diabetes, and it has gone good so far (knock on wood).

I was diagnosed later (16) and my mom has given me shots all of 2 times, the first time because they wouldn't let me leave the hospital until we had both administered injections, the second time it was a bad evening and I couldn't find a good spot.
I was switched to the pump about a year after diagnoses and my moms never touched it.

A non biologically related cousin is type 1 and when he was diagnosed at 11, his parents weren't allowed in the room while they were teaching him how to deal with it because his doctors at the time said that it was up to him how he wanted to deal with it and what he wanted his parents to know about it.

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