Friday, January 9, 2009

Questioning early responsibility

I've been thinking alot lately about how much Diabetes responsibility I *should* be expecting from Maddison at age 8. I think the key here is that every child has different levels of maturity. The age of diagnosis, or how long Diabetes has been present, plays a huge roll in my mind also. Honestly, I believe every parent does what they know is right for their child, and I don't see any approach as the *wrong* approach when it comes to responsibility. I just wonder if anyone see things my way...or am I just too sheltering because I know how having Diabetes really feels?

I tend to think my expectations of Maddison are based around my own feelings of having Diabetes since I deal with all the HASSLES and emotions myself. I personally know how it feels wanting to ignore the low hoping it comes up. I know how irritating it is to have to stop what you are doing and check your blood sugar, even if you are only watching TV. I hate that Maddison has to stop and check her blood sugar in front of all her friends when they run and play wildly outside for hours, I don't want her to be the "different" one, so I sneak in there and check for her as quickly as I can hoping Diabetes doesn't become something irritating to her. I know how my fingers can throb after a poke, and figuring that "this one time" I don't need to check before I eat. To someone that doesn't actually live the Diabetes it is easy to say "how hard is it to stop for two seconds and check?" but the point isn't that it is so hard or time consuming, the point is that sometimes you like pretending you don't have to. So, in the beginning I used to do all her finger pokes for Maddison without even asking,unless she took the initiative.She was also only 6.

Nowadays Maddison pretty much does all her finger pokes and dosing her pump herself, but I still take over if she refuses. Should I "insist" she do all this herself? Sometimes I do insist, it depends on my feelings and reasoning's at the time. I guess I think that each coming age is the ideal age in which I should *expect* more from her, meaning we will INSIST she do all these things herself and "consequences" will result if she refuses. In your opinion is it "wrong" that I give her the option to choose not to do these things because she is "just 8"?

I think I need some other perspectives here.....I'm not necessarily doubting my decisions, I'm simply curious of others outlooks, particularly the adults that have been a child with Diabetes. I know this is an extremely controversial topic, I've just been spending too much time questioning what is "right" and what is "wrong" when Maddison refuses to poke or dose. Should she be faced with consequences when she doesn't want to check her number and doesn't want to bolus? I wonder if someone could influence my outlook by mentioning something in their experience that I have never considered, I'm also looking for assurance that I'm not being to lax!

My concern here really is burnout. Diabetes care today is just so much more demanding than years past. My worst fear is burn out even before the teenage years. Heck, I'm burned out many times and I'm an adult that has only been dealing with Diabetes for 3 tiny years! On the other side of the spectrum, I also worry about having a child that refuses taking responsibility or shys away from being confident to do so. I know Maddison is totally capable, and I know she needs to be responsible to a point, which she is. Of course any expected level of responsibility given has no guarantee what the years ahead will bring as far as compliance and willingness/eagerness to manage the disease. I even fear the day I myself may decide I'm done with Diabetes and decide to let things slide to the point I can't find my way back. You never know what could trigger this scary possibility. Lately, I am wondering if the adults out there (diagnosed as a child) feel that their "expectations" and given responsibilities as a child paved the foundation for how they care for themselves today? Or is your care and attitude with Diabetes today simply based around your personality type, attitude, life experiences etc?

The first year and a half after Maddison's diagnosis (she was diagnosed at age 6.4 years) I was completely against expecting ANYTHING from her. I always did the finger pokes unless she wanted to. If I asked her, she would. But for the most part I came to her when it was time to test. I never expected her to stop playing and test. Why? Because at the age of 6 I just wanted her to be carefree and not "different"....I don't regret how we did things then, but I still wonder if it was the "right" approach. Alot of parents would say at age 6 she should be doing the finger pokes for this is *her* disease and she needs to be "responsible." Alot of those parents also had kids diagnosed in toddler hood. While I mostly entirely disagree with that level of responsibility for such an age, I can also see the point. As always, I can see things both ways... Had this been my first born child, maybe I would also feel differently. Maddison has always been a tad bit on the "immature" side. Maddison was willing to give herself injections as well, count carbs, and get sugar to treat a low at the young age of 6. But we never "expected" her to either.

I would appreciate comments from adults with Diabetes. Why? I'm interested in what responsibility was expected when you were a child with Diabetes vs what is expected in the modern day for our kids with "D". We all know that Diabetes care has become alot more intense over the last 10 years. (or more?) Years ago children with Diabetes weren't expected to test 10 times a day. The constant demands are overwhelming for me sometimes, even as an adult. Sometimes I think the modern day approach (testing 8-10 times a day etc) is what leads to more burnout among our youth. Did you feel supported by your parents? Do you feel they could have done something to help you carry this burden? Do you think your parents expected too much from you, would you have appreciated their help with Diabetes care? Do I make a bigger deal out of the responsibility than it is? As always, I think I think too much.

7 comments:

Jill said...

First of all, I think you're doing a wonderful job! Having diabetes yourself and then having a child diagnosed shortly after had to have been very rough!

Kacey is only 8yrs old and she does all her finger pokes, shots, uses the calculator and adds up her carbs and figures out her own dose (we're not pumping yet) This is something she wants to do and she wants to learn how to do it on her own. I think it has alot to do with her age. We read diabetes books together and if something strikes her interest then we read more about it. There have been a few times when she has asked me to do her shot and that is because she has quite a few little bruises on her tummy and she won't do a shot in a bruise so I do it in her arm for her. Right after she was diagnosed 6 months ago, she hit that brick wall and refused to do anything, shots...pokes...carb counts...nothing! So I just took over and I didn't make a big deal of it but I let her know if she didn't want to do it then I would! Not taking care of her self was not an option so she had the choice to do it herself or I'd do it for her. That only lasted a day ;)

My suggestion would be, as long as she is ok with doing it then let her do it. As she gets older, hopefully she's been managing things by herself for so long that it is just something that is a way of life for her. I do think that letting her take responsibility is part of growing up. Your parents teach you "life skills" (cooking, cleaning, doing laundry, feeding the pets, etc) and this is one of those life skills that she will be learning. It is certainly something that will hopefully be carried over as she grows up. I am hoping that by giving Kacey a positive influence with her diabetes care that she will just accept that it is a way of life and she will stay on top of managing it without too many struggles.

As you said, theres really not a right or wrong answer and it depends on the child's level of maturity. Then we always have to remember that even if they are mature enough to handle it, there may always be a day where they just dont feel like managing it and thats when we can step in for them :)

Good luck and keep your chin up! You're doing a great job!

Scott K. Johnson said...

This is a tough, tough question to which (as you mention) there is no "right" answer.

Honestly, I don't remember much of my childhood (does that mean I'm getting old?). What I do remember is education, both of my parents being supportive but not demanding, and them helping me fit my diabetes into whatever life stuff was happening - rather than fitting life stuff into my diabetes (does that make sense?).

They wanted me to do all of the normal stuff that a kid would do, and tried their best to keep me prepared to deal with D stuff that needed to happen.

Like you say though - things are much different now. Thinking back on things, I don't know how the heck I survived with all I didn't know then that I do now.

Sigh...

And I can also really appreciate your concerns about creating other mental issues on top of the D. I think all parents worry about that, but it is amplified with D.

Beth said...

You know, I think that the willingness to be "responsible" and the "burnout" feelings seem to come in stages or waves. Maybe it's based on whatever other stress is going on in her life; maybe it's just the pre-teen attitude gets covered over by wanting to be a little kid for a while; maybe it's just the wind blows from the west instead of the east. But I'm noticing with Meg that some days she is perfectly willing to have me do it all (even though she won't ask, she just doesn't do it when I remind her). Other days, if I even mention that she needs to check, she goes all Linda Blair/Exorcist on me, spewing green goo and head spinning 360. (It sure seems like it, anyhow)

Whatever works for you and Maddison is the ideal, I think. And of course, that will change as she goes through all the different stages of life....but seeing as how she is going to have to do this on her own, eventually, for a long time, supporting her now and letting her be as much of a kid as she can be doesn't seem like a bad thing. Of course, I'm not the one having all the holes in my fingers and belly either, so....

You're awesome, K! Big hugs for you and Miss M!

katerina said...

I've thought about burnout myself lots.My son was diagnosed a year ago and he is 8. I still try to take the burden of having diabetes as much as i can.eg When he is playing i might test him without saying anything rather than insist he stops what he is doing and test. i do his shots and sometimes i do it so quickly that he doesnt notice he asks me later when i'm going to give him his insulin.Diabetes isn't going to go away at least for the next years i feel this way he will not be so tired and fed up of taking care of his diabetes. However that doesnt mean that he is not responsible or that he doesnt know. At school he knows what to eat when to check. We talk about carbs , low hi gi,ratios, doses. He asks alot of questions and when neither me or his dad is around he takes charge. But every person/child is diferent. Also i think people and children go through phases sometimes you want to take charge and be responsible and sometimes you just want to lay back and have somebody else do it for you. talking about it and asking our kids might also help us and them.

Lynnea said...

I know you wanted responses from adults with type 1, but I thought I'd share the "latest research" given to us by our endo. We go to one of the largest pediatric ONLY clinics in America.

We were told in the hospital that they used to advocate a lot of hands on...meaning the kids were encouraged to manage their own diabetes.

However, they were experiencing a lot of teen rebellion.... a very low percentage were actually OWNING their diabetes in the teen years. They were attributing it to burn out. So....

NOW, they advocate heavy, heavy parent involvement. In fact they were saying we need to be 100% solely in charge....doing all the finger pokes, dosing, etc....so J.J. won't get burned out.

WITH THAT SAID....I believe there is no right or wrong answer. You know your own child. And maybe it's just a balance...and an understanding between you and Maddison. Sometimes J.J. wants to do his finger pokes, and sometimes he doesn't....but he's 5!! Sometimes I know he's just being lazy, crabby or whatever. Sometimes I make him check when he doesn't want to, and other times I do it.:)

Penny said...

Riley was diagnosed when he was 3. He did his first finger stick on his own a couple of weeks into his disease. Yes, at the age of 3. He was the one who wanted to do it. I didn't push it on him.

Even though he learned to check his sugar when he was 3 I did all of his finger pricks and dosing up until he was 5 and getting ready to enter kindergarten. The summer before he started kindergarten I started making him check his own sugars most of the time. It was really painful for me to see him doing it himself. But, it is something he had to learn. The school he goes to does not have a school nurse. I knew Riley was old enough to do it, so he did that part and his teacher learned how to dose with the pump.

The next year, before he started first grade, he started to learn how to dose himself. Now he does all of his finger sticks and dosing at school. His teacher helps by adding up his carbs for him and watching him plug the numbers into the pump.

But, when he's home I do most of the testing (about 70%) and almost all of the bolusing (around95%). About the only time he boluses himself at home is if we're in the car and he eats snack.

I don't know if how I'm approaching it is right or wrong. Riley learned to test and bolus himself out of neccesity. But, I give him a break as much as I can.

I have asked him to test at home before and he didn't want to. Some times I've made him do it himself and other times I just tested for him.

Sorry, I don't have an answer for you. Just like other aspects of diabetes, it's all very individualized. I look forward to reading some more answers to get more insite myself.

Christina said...

I have had Type 1 since I was 11, so just over 20 years. I can say my parents were TERRIBLE parents of a diabetic. The lack of medical treatment, and guidance from a parent still follows me today, at least this is how I feel. I truly believe that if they did all the carb counting, or even helping me take my shots, I would be a different diabetic today. I am sure I was rebellious, I ended up in Ketoacidosis many times, and that is because the testing and shots were not there prior to ending up in the hospital. I may be wrong, but my personal opinion is if my parents had taken control of the disease and accepted the disease, and even made the efforts needed, it would have instilled Diabetic responsibility in me. I have learned to live with the lows, and highs..and as long as I don't feel terrible I feel my diabetes is ok, that's how I was throughout my childhood, college, and adult life. I really only think about it when I go the my doctor (I know this is bad).
I think it is great that you do so much, your daughter will appreciate it later on, even if she doesn't say so now. I do know that my biggest fear is if one of my girls (3 and 4) are ever diagnosed, and what I know of the mental and physical demand of this disease, I would never want my girls to ever go through such a daily lifelong struggle..I want them to be normal. What you are doing is great!! Regardless Maddison knows she is different, and will always have the constant internal reminder that she is diabetic. Especially with a pump, it shows even more. But is that bad? Is it bad to be different? I don't think so. But I do hate my disease. I almost think that it is better that she learns to be really comfortable about speaking about her disease, and taking her blood in front of her friends. I once met a diabetic who was embarrassed to wear a pump..I don't understand that. So I believe it is better for her to be comfortable testing in front of her friends, or explaining what the pump does, and talking about Diabetes. I would assume it is easier to accept the disease yourself, if your not afraid who knows about it. But also 8 is a social age, and it all depends on the child's personality. I am somewhat embarrassed to check my blood in a restaurant (because it is blood in front of peoples food), but assume if I got used to that at a young age, it would not be an issue today.

All that said, I do believe that the rebellion is to be expected? My parents did ask me if I checked my blood, and I would lie and say yes..and make up a number. When I was with friends, I would eat whatever. I hid candy in my room, because I knew my parents would take it from me or make me feel guilty. As a kid it is so much easier not to deal with it. Once I was more on my own, got my own insurance I became more responsible. When I was pregnant I was the best diabetic ever! Actually during both my pregnancies I was great, but once I was no longer pregnant, I went back to my same old ritual. I know there are many diabetics not like me..but I can only assume that I am this way because the core diabetic values were never instilled at a young age. I am successful in every other aspect of my life, work, college etc. I think my work ethic came from my parents..but not my diabetes "ethics".

Going back to your original question makes me think about what I read about children in general. Many parenting books say to give your children choices. Others say kids have too many choices nowadays, and they don't know how to function without having a choice..they don't know to make their own decisions..so you have to give them independence. I personally believe that there needs to be a balance between both. My advice would be the same with Diabetic care, continue to be very involved, but also let her choose to have control of her disease. If you feel she would check her sugars before and after every meal, without you having to tell her..then I think she is on the right track. Over the years I have concluded that the problem with Type I D is that it is a disease you don't realize the consequences of your actions until many many years later. Children in general are not capable of truly understanding consequences (this is why children who commit crimes are not treated the same as adults).
So it will still be very challenging for Maddison to understand if she doesn't check her sugar that one time, or bolus, what he real consequence will be 10 years from now. But you as a parent do, and that is why it is great your so involved. I hope I could shed some light. Sorry for the long response, but my parental involvement when I was a child is a huge topic for me, and wished I had parents do what you are doing! Best of luck! Your a great parent :-)

Christina