Hi I am the Mom of a 22 year old son (Taylor) who was diagnosed with type 1 in 2000. What a ride it has been as a Mom. Still, 10 years later, he still is in denial and it scares me to death. I've literallly tried everything - sending him to camp the first year, getting mentors to talk to him, sending him articles, doing the walk, but to no avail. So, I thought if someone like yourself would e-mail him, maybe he would respond or listen. I'm of course worried about all the complications coming after years of neglect. I would greatly appreciate it! Nancy C his e-mail is badsmacky3@aol.com ANYONE else out there you know who would be willing to reply can e-mail or help PLEASAE feel free to share this with
[quote user="Frank Willson"]
Brittany... Get a hold of your diabetes immediately. It just isn't worth it. I hope Grayson has a long, wonderful, and healthy life and that's what we've tried to show her, that this is the path to that health and happiness.
I had aortic valve replacement surgery when I was 33. I went through a lot of the "why me" syndrome. But control what you can control. Use this as the wake up call you need to get your BG in check.
Take care of yourself.
[/quote]I'm trying really hard to do this...a lot of my family members have died due to complications with diabetes. Starting tomorrow I'm going to stop feeling bad for myself. I'm done living this way. From now on I'm going to check my BG every time. I mean I should be used to it by now. I've had it for 3 years. My doctor said that it was pretty much a stage that all teenagers went through. He said that I had to keep fighting though so...I'm going to. :D
Good for you, Brittany! We're all here if you need support or motivation. :)
Hi Frank - my 16yr old daughter has had diabetes since age 1, and she is actually the member of Juvenation. I joined tonight only because I wanted to respond to you! We have had this situation come up a few times in the past 3 yrs, and most recently 2 months ago. Basically in a nutshell what we understand from our daughter is: she hated testing in front of others (they ask stupid questions, make stupid remarks), she was burned out on testing all the time, she felt like it doesn't matter how often or seldom she tests - that it will be bad anyway, that she just wants to make it disappear and so she didn't test. We have had the same scenario as you in which we went for days asking her "what was your blood sugar?" and she would answer us, and we would get on with our lives. This time we discovered it the hard way - she was taken to the ER with large ketones, vomiting violently, blood sugar too high for the meter, and we just couldn't figure out how it had spun out of control so rapidly since her sugars had been just fine all day (or so we thought).
In the past, we have tried talking, explaining and probably to be honest, lecturing. This time we are doing it differently (with some advice from our doc) and so far, so good. First, we took away the phone and computer. We told her that she needed to focus on 1. health 2. school and 3. health. (We gave them back after 4 days) Second, we told her that there would no longer be verbal responses to inquiries of blood sugar levels, but instead she would need to show us the display on her meter or pump when we ask. (we did that for 3 wks until we trusted her) Third, we set up a CareLink account and are having her upload her data into it every other night or so. It shows every little detail, and she actually kind of likes the techie trending and graphing it does. Fourth, we decided it was time to really give her the lowdown on just what she was facing if she decided to battle her diabetes with neglect, in the way of complications. We had never wanted to scare or depress her in the past but we felt she needed to know. OMG, with all this meddling she was mad!!! She hated us, but we just stayed calm and patient, and kept telling her how excited we were for her, because she must have been feeling like (there's no better way to put it) crap while her sugars were so out of whack. We promised her that she was going to feel like a million bucks and prove to herself the value of testing regularly within 1 week. Well, after a few days she did have to admit that she wasn't nauseated all the time, and that she had more energy. Within the week she was like a different person, and gave us a very tearful apology and commitment to take charge of her diabetes by testing and being informed rather than in denial. We didn't take over the testing for her - we rather just look over it more carefully.
Since then, we have let her 16th birthday come and go without the car she wanted, because we have held fast to our declaration that until we can trust her to test herself without our oversight, we can't let her get behind the wheel. She is now, of course, taking care of business like never before:) However, we have had many little quiet discussions in which I try to remind her that my goal is for her to feel motivation to test because she values and desires good health and longevity, NOT a car or phone etc. However, until she grows up a little and matures, we will take the motivation any way we can get it. She is also learning that this time, mom and dad are taking a very long time to trust her again. We just keep gently reminding her that we aren't mad at her, and that we totally understand (Heck, I can't even finish a simple course of antibiotics to the end because I just get lazy...) but that this is basically a life or death thing, and she is our responsibility and most treasured being in the world so we won't compromise.
You know, she would never admit it, but I think that she is comforted by our taking charge and keeping such close tabs like this. She really resisted at first, but it seems to now have brought us closer.
By the way, when we were first diagnosed, I started a support group for moms with toddlers and was very involved, but as other children came, and we switched to a doc out of our area, we drifted away. To be honest, my daughter doesn't know anyone she can talk to or complain with either. She has no desire for it. She did go to camp a few summers at age 13 and 14, and absolutely loved it. Cried the whole way there her first time (scared) and cried the whole way back ("Its over too soon!") So, I do recommend camp, even if she's resistant. If she doesn't feel comfortable with the support group setting, I can respect that. Maybe getting involved in a round-a-bout way such as volunteering in a fundraiser event as part of the organizational team, rather than the participant. (such as be in a fashion show which raises funds for the local Endo. dept., or help at the local JDRF chapter to pass out water at the local walk) That may feel more empowering for her.
Well, those are some of my thoughts and experiences. I hope and pray that you and your wife will find a way that works for your family! All the Best to you.
Kimberly- This is fantastic advice for any parent. It's hard to be the heavy and play disciplinarian, but being a a good mom or dad demands it for our kids' welfare.
This is mostly in response to Keith, but it may apply to others as well.
I was diagnosed when I was 6, so my experience is totally different from your son's, but the first thing I thought when I read your post was "why do you even have this food in your house?" The temptation of all that "bad" food there, and watching the rest of you eat it and knowing you can't eat it, even though you could before must be tremendously difficult. I realize that the rest of your family isn't diabetic, but eating like one would probably make your entire family healthier in the long run too.
I have a twin sister and a younger brother, neither of which are diabetic. When we were little, my mom rarely ever have any kind of cookies, brownies, etc around the house. As we got older, that changed since my brother ate like a bottomless pit and Special K just wasn't cutting it anymore. It got much harder for me not to eat the cookies and brownies, and sometimes I just couldn't resist. It takes an incredible amount of self control and sometimes I just couldn't muster up the energy.
Having a diabetic child and supporting them needs to be an effort all of you undertake as best you can, because it will never be easy. Obviously you can't purge your entire house of food, and your other kids will probably get mad about being "punished" for something they don't really have to worry about. And you need to have some stuff around to treat lows. But cutting back on the amount of "tempting" stuff may really help. Even buying the poptarts without frosting vs those with frosting is a small step in the right direction. Also, if you try to eat what he eats, you will be supporting him in action, not just words. It is eternally frustrating to be told how and what to eat by people who don't eat that way themselves. Telling a kid, diabetic or not, to eat yogurt instead of a cookie, while they watch everyone around them eat cookies... wouldn't that make you angry and resistant?
Megan brings up a great point. I was also diagnosed at 6, so the changes my parents made were before I have much memory of them, and also around the time my only other sibling was born - so we lucked out in that sense. My brother doesn't remember the "before". We only ever had diet soda - never regular - in the house. I don't remember a lot of junk food around, but Twinkies and the like would make an occasional appearance. It's true for me, even now, that if I don't have "bad" food in the house - I can't eat it. And when it's there - I do. Simple as that. My self-discipline when it comes to sweets is inconsistent, so I'd rather just not have it around me, when I can help it.
Sorry Megan - your wrong on this. We keep no cookies, chips etc in the house. My son is getting the food from vending machines at school and bringing them home. He also has a number of stores within walking distance including a grocery store close by and will ask us for permission to go for a walk - while there he will pick up food and bring it back and hide it and eat it later.
We manage the food that is brought into the house and prepare healthy foods. Other than locking him in his room we feel we have done the best we can. We can't do it all and sometimes he needs to take responsibility for his decisions.
I was also a bit offended and to be honest beomg diagnosed at age 6 and age 14 are worlds apart.
[quote user="Keith"]
We keep no cookies, chips etc in the house. My son is getting the food from vending machines at school and bringing them home. He also has a number of stores within walking distance including a grocery store close by and will ask us for permission to go for a walk - while there he will pick up food and bring it back and hide it and eat it later.
[/quote]Ah, a misunderstanding, then. I was operating under the same assumption Megan was - but it's a whole other ballpark when they're sneaking the food in themselves. I apologize if anything I said previously offended you too, Keith. I read into your post incorrectly as well. And yes - diagnosed at 14 is much different than diagnosed at 6.
I would like us all to try to be careful about judging people's diabetes management techniques. Offer what you (or your parents) did that your think helped or hurt, but don't point out what you believe to be wrong with someone else's choices/decisions. I know we are all trying to help but this conversation has taken a negative tone. Thanks - Katie (part of the Juvenation management team)
I'd also like to point out that people with type 1 can have chips and cookies and candies. The trick is fitting those into the guidelines prescribed by their medical team. I was diagnosed in the day & age when these "treats" were not allowed, and so what our house looked like when I grew up with type 1 is different
I also know many families struggle with the letting go of parental control to their children with diabetes whether that child is 10 or 30. It's a give and take, live and learn. Keep working at it, Keith.
[quote user="Keith"] For them its a matter of numbers - they think "I can fool my parents so many times and then get caught and when that happens I will handle it then". [/quote]
Keith, I am around ur son's age i am 14 will be 15 in july. Last summer my mom and dad made me stay with my aunt for 6 weeks whlie they were in the truck. And while I was there i would senck food and eat it. But on June,27,2009 I was taken to the hopital and was there intell about 2 in the mouning, I was admiedted but did not need a IV, They wanted to make sure that i would come down, They would not let me leave intell i was under 250, When they did let me go, they put my on antbotis said I had to take one with every meal. That day changed my life for ever, And when i want to the doccter in sepmtber they said my A1C was 6.1. I got my life together because of that day. There are still days that I dont want to test but I have to tell myself i dont want to end up back i the hopital.
I've gone back to my old ways again... I can't help it. I mean I want to do something about it but I just can't! I went to my endo and my A1C was 8.4. He told me that I needed to start taking my insulin before my meals so the insulin could get a head start...I'm really trying but...yeah. :S
This is a normal thing for a diabetic of any age to do, I did it, my Granpa does it, and millions of others do it ,too. Though it is not something to feel good about it, even though you are the parent, and are not lyeing your self, it is some what your fault, but very slight, it also has very little fault on you daughter. Some people will tell you to see an endochronologist, but don't, not on this matter, suport groups won't help so much ethier, they only want to talk about themselves, my advice, see a family phyciatrist and tell them that it's a bonding and trust problem, because that what it is. remember it everyones', including her friends, yet no ones' fault.
Brittany, it's Grayson. My dad wrote about me going through the same issue and feeling the same was as you. With my friends and family constantly acknowledging that diabetes was there and part of my life, I just wanted it all to stop and go back to normal, the ways things were before I was diagnosed. After my parents figured out what I had been doing, we talked about it. You really need to think about long term effects and not just what's happening now. What got me to regulate checking my blood sugar was thinking how scary it would be to have my doctor tell me some day in the future when I'm on my own without my parents there to support me that I would die soon or become blind because when I was a teenager I made bad decisions. I don't understand why you won't take your insulin, it's only there to save your life. If your scared or freaked out or annoyed by the shots, switch over to an insulin pump. When I did my life was as close to normal as it could get but being a teenage girl it definitley has its downsides. You really should talk to someone whether it's family, friends, or some stranger you met on the street. It helps to talk it out
I would do that and still struggle with doing enough tests but , realized I felt like I was being judged by my numbers!!! That was a BIG discovery for me!! Now everytime I test, I say "it's just a number!"
That's such a good point Jody.The times I did watch my daughter test when she was younger-I was watching for the result-and she was watching for it and my reaction to it.She called me on it once too-She said she didn't want to test b/c of my reactions at times.I tried after that not to show any reaction-which can be hard sometimes.Susan Gamble has written on Juve.about this and has helped me with this issue.
Frank I'm also 14, have been type 1 diabetic since november 2007, and what most parent don't realize is how tough it is to be diabetic.
It seems like your daughter is the only diabetic in your immediate family? I'm that way too. You need to give her some space, because at this age teenagers just want to have freedom and be independent. I suggest getting her involved first of all with this website.
Second, I go to a diabetes sleep away camp. It's amazing! My first year I was terrified and didn't want to go, but once I got there it was great being in a place where EVERYONE HAS DIABETES! While it's too late to sign up for this summer, she should find a diabetes camp nearby and sign up for next summer. I can't even express how much FUN it is! The counselors really help, and everyone is so welcoming. The camp I go to is Camp Nejeda. You can check it out online at www.campnejeda.org and look around the website. I really reccommend going to this camp. But if you find one closer to where you live, by all means check out that one too.
Another suggestion I have, which may require a little bit of work on your part, but test your BG whenever she does, so that she doesn't feel alone. Honestly, if she can do it, and she will be for practically the rest of her life until there's a cure, you can. So I would really try to just follow her daily routine also.
And last, look into getting a pump with continuous glucose monitoring, that way she only has to check her BG twice a day.
I hope I helped.
I hate when my mom reacts to my BG. Especially if it's a bad number. I sometimes had to lie to my mom about my number and how much insulin I would have to take. But then I realized, it doesn't matter how my mom reacts, it matters how I react. So now I'm completely honest about my BG because it changes constantly and I have only some control. I can never always have a perfect BG.
For me I haven't ran into this problem yet and I'm 15. I'm actually very accepting of my diabetes even though it is scary. When first finding out I had diabetes I was that way not wanting to take blood sugars or give myself insulin, but accepted that I would have to do so for hopefully not the rest of my life hopefully they will find a cure. But I looked at my situation on having type 1 like this. Diabetes shouldn't be taken lightly and you should take care of yourself, but their are worse disease out there. My father had stage 4 throat cancer last year and we came close to losing him, to me you could have something worse like cancer, so I'm actually thankful for having what I have and not something more serious. Compared to that a couple finger sticks a day and changing your sites every 3 days isn't as bad as losing your hair, and going through the effects of chemo and radiation. I've been through the why me stage when I started out, I've taken it is a trail a challenge I must go through for God because he wants to show me or teach me lessons out of it, he could just be showing you how incredibly strong you are and I also took as a wake up call to slow down and enjoy the little things out of life because before this I was moving 70 mph without stopping.
Good points Kevin. She did open up to us about how it's a pain when we're constantly asking so we've tried to not be so naggy about it.
She's told us that she wants to go to camp next year. Last year she was in band at school so she went to that camp instead. I think the more she reads about it the more excited she gets.