Why do they not care?

[Mom2Deacon]

Yesterday, the endo didn't see us until two hours past our appointment time. The front nurse and I got to talking because she explained to me that the doctor was seeing a patient with problems. Which got the nurse to telling me about the kids who do not care to take care of themselves, not names mind you. She said they have a newly diagnosed teen, whose mother won't do anything to help them. The mother told the teen that this was entirely up to them including taking themselves to the ER if need be. They have another patient in kidney failure who is only 17. Those were the most prominent. She was saying they have many parents who just do not care or the kids' themselves don't either.

Unfortunately, then I saw one of those teens first hand. She didn't bring her meter nor logs with her. All she was carrying was a kool-aid burst. The mother lay into her for not bringing her diabetes stuff with her. I was thinking, "Why didn't the mother make sure it was brought?" Here I am carrying a beach bag full of the stuff I needed for Deacon's day. (The mother acknowledged our bag too, and my conversations with the CDE and nutritionist.) I know there is a difference between being three and a teenager, but I will make sure Deacon has everything with him for his appointments until he is out of our house. If need be, I will take it all with us myself.

It is sad that for something that is manageable, many still do not care to.

--Sara

[frizzyrazzy]

Yeah, I totally hear you.

We went to a meeting the other night with a social worker as part of a jdrf thing, and one of the handouts she gave said basically that the kids with the least amount of trouble are the ones who's parents actually help them through and don't give them too much independence too early. it went on to say that the old way of thinking was that early independence made for better control - it meant the kids were taking charge of their diabetes and they put a high priority on it with the parents too. And then they found that those kids rebel. A LOT.

So maybe this is also partly the fault of the endo's for not insisting to the parents that despite the fact that these are teens that they still need a lot of guidance. Or maybe it's just how these parents are? I'm always at a loss there. And I also agree, why don't the parents make sure the kids have what they need? Parenting doesn't stop just because your child is a teen.

[momofsingingdiabetic]

I find myself in the middle. Danielle is 14. Diagnosed at 12. While I watch over what she is doing. Get up most times overnight to have her test, ask lots of irritating questions, etc., I also have her do a lot of stuff herself. She does the majority of her site changes (unless we go to an area she can't reach), her testing (unless she is sick), her own carb counts. We do help if she asks and give suggestions, etc. Because of how we have gone about this, she's been able to take 4 out of town/weekend trips without us since dx. Two with school and two with her community choir group. She always has adults with her that are either trained by the school or me. She doesn't panic when her number is wacky. She had a site problem in DC last weekend. She called me and we talked over the problem, she changed out site, then had to change cartridge (everything was wacky that night) and gave herself a shot.

I think as a parent of a teen with D, you have to find a happy medium. I or my DH will always go to her appointments with her. We take off work if she is really sick, etc. But I also know that one of these days, she will be in college or out on her own and I want her to know how to handle all these things BEFORE she is in that situation.

[Sarah Maddie's Mom]

In general I think that stressors, like illness, just exacerbate pre-existing dysfunction in most families. I would hazard a guess that these families weren't functioning all that well pre-dx. :(

I think we sometimes forget that we don't represent the "average" family coping with D. The parents who come here are a self-selected group. I wish all D kids had parents who get it, and who are willing to do what needs to be done. But even w/out D, we all know parents who, perhaps, aren't really cut out for the job.

[lil'Man'sMom]

I am the parent of teens...Let me say on a day to day basis it is easier being a parent to a six year old with D then a rebel teen non-D.

They totally have a mind that is unlike the rest of the human race. Mind you, I have two totally different types of teenagers, but even the "sane" one is a little "insane" at times.

When lil'Man was first dx'ed I cried and asked why did it have to happen so young (just six) but I realize now that if the dx came when he was a teenager we would be dealing with a different monster all together.
I am not saying that it will be easy as he becomes a teen, we are trying to make his life as normal as possible, meaning he will go "insane" from 12-thru????,
we hope that we will at least be able to control D.

I do feel for those parents who had dx during the "insane" years, I feel for parents who are just having to sit by and watch feeling hopeless at this time of life.

"Raising teenagers is like trying to nail jello to a tree", impossible, throw D in there and I guess it would be unimaginable...r

[twodoor2]

In general I think that stressors, like illness, just exacerbate pre-existing dysfunction in most families. I would hazard a guess that these families weren't functioning all that well pre-dx. :(

I think we sometimes forget that we don't represent the "average" family coping with D. The parents who come here are a self-selected group. I wish all D kids had parents who get it, and who are willing to do what needs to be done. But even w/out D, we all know parents who, perhaps, aren't really cut out for the job.

Well said. I think about what would happen if Elizabeth had my mother for a mom. She'd probably have an A1C of 13, and my mother would be in the hospital more than Elizabeth (for a nervous breakdown). Not that I don't think my mom didn't do a good job with me, but she just isn't cut out for taking care of sick children. She even admits it. She wouldn't have the nerve or guts to do injections (again, nervous breakdown). I have a feeling my dad would probably do all the D-care. Other than that, she was a good mom, just not cut out for the strenuous, stressful and meticulous work that comes with caring for a diabetic child. It's just that D adds a level of complexity that some families have a very difficult time handling.

[ScottB]

As far as why a newly dx'd teen doesn't take care of themselves can be a tricky question to answer because more often than not, the answer is complex but the way I see it, it starts with the parents. When I was a teen in HS a teacher made the comment that when it came time for PTA meetings, the kids who were doing well were the kids whos parents were the most involved and showed up for the PTA meetings. The kids who were doing poorly were the kids whos parents seldom showed up. The way this may translate into teen D care is that there is a difference between nagging and being supportive. The first couple of months after Justin was dx'd last May, he struggled to look at the "big picture" with a positive attitude because the reality of having to deal with D for the rest of his life wasn't an easy pill to swallow. However he learned that his long term dreams and ambitions were still possible, the key was that he realized that in order for that to happen, he had to take care of himself and be diligent with his D care. Sharon and I also made it very clear to him that we would do everything we possibly could to help and support him and we only asked 1 thing in return and that is if he didn't want us nagging him, he had to get his act together and take his D care seriously.

So far it seem as though his pancreas is still honeymooning a bit which has helped him keep a good BG average and his a1c results prove that he's not making the numbers up. However it's become so routine and easy for him that he does tend to get lazy from time to time and that's why we are always looking over his shoulder to make sure he's doing what he's supposed to be doing. Another bonus is that his girlfriends father has D as well so she knows the importance of D care too so Justin knows that if he doesn't do his part, not only will he have to deal with us, he'll also have an angry girlfriend to deal with too.

[zell828]

Teens sometimes don't have the reality ever sink in, they are at the age that "nothing can happen to me" or they don't care or worse yet, they are in denial and simply don't want to deal with it. I was diagnosed with epilepsy at age 17 and went into denial for 7 years after that because everyone just put all the responsibility onto me. :(

I think even if my SD started to give her own shots as a teen I will still always be there making sure she does things right or supporting her. I just can't see myself washing my hands of it all and letting her handle it. That's just me. I believe this is a family disease that we should all be involved (at least until she moves out on her own). I know what going into denial did to my life and I just can't let that happen to my children.

Kids just want to be kids sometimes and I guess I can't blame them.

[AlisonKS]

When Tony was in the hospital in November (tummy bug that turned to dka thanx to a stupid ER), he made friends with a girl on his floor whose grandmother was a former social worker. She told me she had many cases where the parents of a D child never did anything, their children were always in the hospital, out of insulin, never tested, etc. I don't get how people could do that.
ETA: my cousin got pregnant as a teen from another teen that had diabetes. Her parents had to take him in, because his parents refused to buy him any supplies or insulin-it was a bad situation but they wanted to keep the father of their grandchild alive.

[momofsingingdiabetic]

When Danielle was in the hospital in Sept (tummy bug turned ugly), the PICU staff were very interested in how her infusion set was inserted and how her pump worked. The reason....they said that they had never, ever had a doctor put the patient right back on the pump after DKA because the parents and child were not taking care of the diabetes. As soon as she was off the insulin drip, they had us put her back on the pump....even when she was stillin PICU and the instructions were to let the parents handle the insulin regimen. They said that there were so many kids that were admitted every few months or so because the parents refused to learn.

[juggernaut]

As a parent of a new diagnosed teen I see my job as training her. I only have four years to help her figure this whole thing out because then she will be out of the house. If I do everything for her I am doing her a disservice. I try to do a balancing act of letting her manage and helping and yes that does mean she makes some mistakes. But that is one way that she will learn. If I am controlling all of her care she will not be ready to go out on her own.

[zell828]

As a parent of a new diagnosed teen I see my job as training her. I only have four years to help her figure this whole thing out because then she will be out of the house. If I do everything for her I am doing her a disservice. I try to do a balancing act of letting her manage and helping and yes that does mean she makes some mistakes. But that is one way that she will learn. If I am controlling all of her care she will not be ready to go out on her own.

I agree with older kids, don't take over 100%, but also, don't back out 100% either. Meaning....train and teach and let them do it themselves, but still be supportive and there for them.

[Charmed7]

I always keep this in mind when I talk to my RN at the endo's office. They constantly comment "You so get this, and you're doing such a good job managing his diabetes" Just today I was complaining about a 210 Midnight reading, and I could hear the stutter in the RN's voice. Sort of like, "I have parents that don't flinch at 210, never mind checking at midnight."

I definately think there's a balance between teaching your child to manage D-Care and watching over shoulder. I want my son to learn to be independant, but if at any time he starts slacking and "not caring" I will be holding his hand like he's a three year old, I don't care what he will have to pay for a psychiatrist in his early 20's. :D

Charmed

[zell828]

I want my son to learn to be independant, but if at any time he starts slacking and "not caring" I will be holding his hand like he's a three year old, I don't care what he will have to pay for a psychiatrist in his early 20's. :D

Charmed


LOL....cute :)

[Jensmami]

Jenny's endo told us, that they see many kids only when they come back into the ER, because they won't come to regular appointments and their parents don't take care of them. :(

[MrsBadshoe]

We've heard the same stories from our endo group as well. I also spoke with a local school nurse at my dd's soccor game and she had similar experiences. She had a 12 yr old whose mom didn't care. He was arriving to school at 500, the mom blamed it on the school.

[KeltonsMom]

I do not understand it either, Kelton knows a boy in the neighborhood who is 17 and has D but he only tests maybe twice a day :eek: He is a type 1 and on a pump.

The boy's parents have left his D care up to him and have no involvement in it at all..

Sorry I do no approve of this at all..There was a time when Kelton was having diabetes burnout so I took over everything, it is my job to make sure his D care is taken care of. Fortunately this only lasted two weeks because Kelton was tired of me always reminding him to test, or me testing him or giving him his shots. He realized it was easier for him to remember and do the shots than it was for me to.
Plus I bought him a watch that has an alarm that can be set to remind him when to test, this has helped him a lot.

Now he and I test together, compare numbers we grab calculators and figure out carbs together, correction doses together.

There are also consequences for not testing, he would rather take the time to test than to loose a privilege for a day.

[wendyc]

Regardless of our age, we still all need boundaries. I think as a pp stated, this family unit probably had issues prior to d. I have a friend with a 16 year old who knows on certain nights her daughter won't wake up (due to a heavy school day), so she still gets up and does the late night check. Her daughter is ok with that. It's not an everynight occurance, but mom steps in when she knows her child needs it.

It's a matter of creating a happy medium with your child. A parent is not a job from infancy to 16, it's a lifetime career.

[Mom2Deacon]

I understand that there are happy mediums. I am just appalled about the parents who do not even attempt to create those happy mediums or try to help out at all. My kids are going to hate me because I am so involved with them. It is not just with Deacon. I know that yesterday morning, Deacon and I were a breath of fresh air.

--Sara

[Jacob'sDad]

I've often wondered just how bad it gets with people not taking care of their kid's D or their own D.
We all know their are people who probably shouldn't even have kids but they have a bunch. There are people who leave their kids alone while they go out and party or do whatever they feel like and come back whenever they get around to it. There are people who are just plain lazy. What's it like when those kind of people end up with a kid with D? How much damage is done before the child finally gets put in the hands of someone who can take care of them?

[bgallini]

At least those parents were taking their kids to the endo. I think, as others have said, some families just can't cope with D for many reasons. It could be money or psychological issues or other stresses in the family. They may not have much education about D. I have to say that our endos office did do a lot of education with us that one day when he was first dx and again with the pump start but some people may not have been able to digest all that info in such a short time or may not have thought to find ways to learn more on their own (or are taking advice from t2 relatives).

And teenagers! Oy! My son did great at first with all of this. But he will go w/o testing at times (forgot the meter, didn't have time). I do punish him for not testing before driving but there's only so much I can do. I can hound him and hound him and force him to do what he needs to do now or I can do it for him but he will be out of here in 5 mos and I don't want him to totally rebel against me and decide that he can just show me by not taking care of his D. It's just not as easy as it sounds. I can deal with younger kids but teenagers.....

The girl w/o her supplies may have driven over to the Dr on her own (from school) and met mom at the appt. Maybe mom will learn from this instance and make sure her dd brings everything next time but it can't all be blamed on the parent.

I'm not trying to make excuses for these families. I hope they do try to take things more seriously. But we don't know enough about them to really judge them.

[hawkeyegirl]

I do feel sorry for the kids whose parents don't have the desire or ability to learn to care for them well. Sad as it may be, I think there are quite a few parents out there who just don't have the skills necessary to do what needs to be done to ensure even basic care.

We went to some pre-pump classes where they were teaching us about carb counting. Now, keep in mind that I think everyone there had been diagnosed longer than we had (at the time, we were 3 months post-diagnosis.) To us, the carb counting stuff was old hat. Yet, when the presenter would say things like, "Jimmy's I:C ratio is 1:10, his correction factor is 1 unit for a bg 200-250, and he ate 40 carbs at his last meal, with a starting blood sugar of 235, how much insulin should he get?" people were yelling out, "Seven. Two. Three and a half." My husband and I just looked at each other in disbelief. How can people who can't do simple addition and subtraction correctly dose their kids? They might as well throw a dart at some numbers and just use that. And this wasn't even the complicated stuff. I picture these people trying to factor in IOB, and exercise and high fat meals, and there's no WAY they can do it.

We do often forget that the posters at CWD are the "gold standard" when it comes to how to care for a type 1 child. We tend to beat ourselves up here for things that other parents wouldn't even know to care about. I'm not saying that we should care less, but we should probably WORRY less. :o (myself included)

[Illinifan]

Our pedi endo retired from the AF last September and in January joined the endo clinic at Dayton Children's Hospital. When Zach saw her a couple of weeks ago, I asked how the civilian practice was going.

Her response was that it was completely different than the military where most kids had two caring parents or at least one. She said that for most of the kids she sees now, diabetes is the least of their concerns. She was really shellshocked.

[lynn]

There is a family at my church with a daughter who just turned nine. About a month ago I was walking into church and the mom was walking out to go to the store. She stopped for a second to tell me that her daughter woke up HI that morning and had large ketones.

I went on in to sit in the nursery with the little ones during Sunday school. After a while the mom came back and into the nursery. She said that she had to go give her daughter a shot. She hadn't given her one yet!!! Then she came back a minute later to tell me that her daughter hadn't brought a syringe so she wondered if I had one she could have. So I gave her one and she went and gave the shot. Ten minutes later the poor girl was at the door looking like death warmed over to tell her mom that she just threw up. Her mom told her that there was nothing to do about it. She had insulin now so just go back to Sunday school!!

This girl has been diagnosed over four years. Her last a1c was 10.5. She is responsible to remember to test and bolus on her own. Her mom does site changes, but that is about it. That Sunday her mom was mad because she told her to pack everything she needed and she didn't pack a syringe. She is a little girl who has off the meter blood sugar and high ketones and she is expected to remember everything!!!!!!!!!!!

It isn't only teens who have these issues.

I really struggle with my role in this family. And her endo's responsibility--when is it time for the dr. to exert more pressure? Is it sooo prevelant that they throw up their hands?

I can't stand thinking of all the poor kids out there who don't get good quality care. When will their complications begin? I pray for their protection.

[cpmms]

My daughter is 12 and was Dx last October. She has insisted on giving herself all her shots since the first day in the hospital. She has never allowed me to do it, nor let me change her infusion set now that she is on the pump for the past 6 weeks. We do however, help her by getting supplies ready, helping log BG, discussing carb counts, etc, and "over seeing" that things are done. We so far have been very pleased and amazed about the responsibility she has taken. Her numbers have been for the most part great. She may still be honeymooning. We know that things may change as she gets more into the teen years, we plan to be there every step of the way. We hope and pray that she will continues to be so diligent in her care.