That First Year

You've changed Mom....It had been a few months after we learned she had type1 ..I felt worried,scared.uncertain.depressed at times.It was too much,I was overwhelmed...but I felt that I hid it well from her.Smiles before school-tears during the day.I had changed and she saw it...and I had to find my way back to my old self---for her and me.They say the first year is the hardest..and looking back-I have to agree.What was the first year like for you as a parent  ??

Still in the first 1/2 year- so probably don't have the perspective to know just how we have all changed but..... 

I know I am alot more aware of all things medical -- I used to be blissfully ignorant. 

I am prouder than ever of all he has accomplished because even though I know he can still do anything he did befor- he is doing it with extra baggage.

I pray daily with thanksgiving for all the wonderfull educators, support groups and medical staff that make it easy to learn what we need to know and all the developments that make it possible to deal with diabetes much easier than it used to be  ... but pray even more  fervently that a cure comes soon so we never need any of it ever again!

I sleep less, worry more, eat more chocolates  (good stress releif right?)   & hug him tighter than I did befor.   

Still in that first year, here, too.  The panic is over.  The trouble is not.  I don't mean that his diabetes is trouble.  Well, it is for him.  I just mean that now that he is convinced that he isn't going to die, his concern for tight control has evaporated.  Tears are still shed (by me, in private) when I discovered last week that there were several days when he had only checked his blood sugar twice.

I wonder what the anniversary is going to feel like (in 22 days). 

I'm proud of me for getting him to go to diabetic camp last summer.  Now this summer he will go away to dance camp for six weeks, be home for a week, then off to be a junior counselor at diabetic camp for a week.

It's like we've been rejoined in a way.  Sometimes this is good, sometimes this is painful and agonizing, sometimes this gets in the way of his independence. But I've only got two years left before college to make as much of an impression on him as I can.  Do others feel that deadline looming?  Last year, before diabetes, I was aware of it, but I always need he'd be a-okay!  Then the diagnosis and now that deadline is HUGE.  I'm not 100% convinced anymore that he'll be a-okay.  The amount of stuff on his proverbial plate just got so much bigger!  He's very capable, but right now, very much a teenager.  It's so hard not to worry about the damage he might do to his body before he figures it all out.

It's barely just over 2 months and we have sunk into crisis mode.  I'm not sure what date to put for diagnosis but my dear daughter, 13, was tested on 1/18/2010 and then was hospitalized on her 13th birthday.  We had a house full of girls and had to cut the party short to be thrust into the world of Type 1 diabetes.  The kicker to this is she already suffers from a blood disorder that makes her miss school routinely, have monthly doctor's appointments, limits her ability to participate in certain activities and sports where there are extremes of conditions like anything outside in the freezing cold, or hot sun, or swimming in cold water, etc.  She already felt self-conscious about her health and how other peers treat her.  Now, we have an additional diagnosis of D where now her medical routine and eating routine have to be controlled as well.  I thought she was doing well, but apparently some behavioral issues are now being exhibited at school.  She is on the verge of being asked to leave this wonderful private school and I am just sad all the time.  I am working on counseling for her but now realize as I cry through this posting that maybe I need to go as well.  As a single mom with two kids, one going through the horrific process of college applications and the other in medical chaos, it's been a doozy of a year and it's only APRIL!  I'm hoping that it gets better because I pray that it can't get worse.

I am almost in tears for you here as well!  I am so sorry for everything that is happening - teen years are so hard for girls and their moms anyway -- and then to start them off with such a difficult diagnosis.  Hugs and Prayers coming your way.  For us it got easier after month three but we are still dealing with it dose to dose...think that will be our normal.  Cole is 13 as well and diagnosed just one month after his birthday.  We are dealing with constant headaches but no other complications like you have been.  Be sure to take good care of yourself so you can take good care of her. HUGS!

Thank you so much kbscrapper for the encouragement.  My daughter also suffers from migraines so I know how the headaches can turn your day around. I've had the most productive day yesterday and have gotten in touch with the local children's diabetes support group and found a camp for the summer.  I will take it one day at a time. 

Parents, I just joined this group as sort of an adopted member. You see, I am indeed a parent, but not of diabetic kid(s) -- I am the type 1 diabetic. But I thought it would be helpful to some of the parents to have someone like me in the group, posting from both the position of having been in the diabetic youngster's shoes and also in the shoes of a parent.

I can still remember the look on my mother's face when the doctor made his diagnosis. This was back in the dark ages of diabetic care, and I remember very clearly (I was 12 years old, and old enough to completely understand what he was saying, but he talked to my mom and not to me) when he told my mother that my blood glucose levels were abnormally high and that I was a type 1 diabetic. He also casually told her that my life span would be shortened --  he told her that I would not live long enough to be an old lady. I am currently a very happy and disgustingly healthy grandmother, and I wish my poor mom had lived long enough to see that his statement was wrong. To the doctor's credit, though, back then, there was no way to do home glucose testing, and so at that time, the disease surely did doom most of the folks who had it to shorter lives and to complications. But even growing up only able to test glucose spills in urine, I managed to be able to live a very active life and remain complication-free. My point is that you parents are all terrified for your kids, and I want to assure you that the equipment we have nowadays gives us a very great chance of a very normal life. Normal marriages, careers, and healthy non-diabetic kids of our own, too. In the first year, you are normal to be terrified.My mother worried non-stop.

I would encourage you to take each challenge as it comes up, for there are surely plenty of challenges in raising kids through the teen years even without health worries thrown in. I would also encourage you all to deliberately work to increase the child's responsibility for his or her own care as they grow. If there are periods of denial and avoidance of testing, try to use the "we" approach: "let's discuss what each of us can do to help you get better control of your glucose levels." There are things that the parent can do and things that the child needs to learn to do. If it is approached as a teamwork effort, the child is less likely to be rebellious. Perhaps some sort of reward system for keeping his or her end of the bargain, and perhaps it would be fun to incorporate a system whereby the PARENT is also judged on his or her own success or failure to do what the child decides the parent's role should be. Let the child come up with ideas so that he or she feels that his or her wishes are being taken into consideration. Then suggest some things that the parent has thought of, such as being responsible for making sure that snacks or juice cans/boxes with just the right amount of carbs are always available, being on time with meals (when the child's glucose levels are somewhat tightly controlled, a late meal is an invitation to a hypoglycemic episode), etc.

Nowadays, these kids have every opportunity to live very normal lives. They must learn responsibility earlier than their peers do, but this is not a bad thing.

Well I mentioned it in a previous post but as I said its been one year - last week with T1.  I have also heard the first year is the  hardest and I certainly hope they are right. We have been thru the emotional  grinder in so many ways.  I think the thing that helped me was going to the diabetes retreat hosted by JDRF chapter in St Louis. They had a seminar for parents with teens. I heard from a parent going thru a divorce - the mom is dedicated to the care of the diabetes and the dad thinks it no big deal and they will have to share custody.  I heard from parents of teens learning to drive or have been driving a short time, parents who have teens who have just tired of dealing with it all.

I found that those who were diagnosed at 7 o 8 do not necessarly manage their diabetes better as a teen. For them its gotten quite old. They know more about the disease but not is not necessarily a positive.

So, the one thing I learned - and really learned was that we all love to see the smiling faces of children with diabetes on the websites but we really deal in another world - we will have to think about college, driving, days in the dorm, drinking etc.

We don't want to but they are realities. I was so happy to have been to one of the seminars where there were 4 teens (ages 15-19) honestly talk about what they did and are doing. They were presented with so many questions from the parents and they answered all of them honestly.

Yes, they lied about numbers sometimes, they cheated on food, they did not bolus, they went long periods without checking their blood sugars, they drove, they drank, and they did just about everything that they are told not to do but they tuned out to be good kids. The ones going to college and who have leaned to drive were great. They would talk about sharing information with their college roomate about what to do for highs and lows, they talked about testing before they got behind the wheel as a way of life and always carrying around something to boost their BS if needed.

So they are doing fine and there is absolutly no reason to not believe that we will not get thru it also.

So, back to first year as a parent. I was overly optimistic at the start of it all. I saw my son do all the things they said to do, and I remember tellling all the relatives how good he was doing testing on his own, sticking his own finger, watching what he ate etc. Then he stopped and the war began. We played where is your meter  so many times I can count. We had no strips when we needed them most and then we had the days when he just did not care anymore. It was no longer a novelty, no longer something he cared about. He became sullen and withdrawn. We have fought major battles over little things due to high blood sugars. Yes, we have been to the ER many times for illness and he has missed a lot of school.

He has used diabetes as a crutch not to go to school, or not to stay in class or not to behave in study hall. He has gotten in trouble for saying things when he was high and we panic everytime we tell him to get up for school and he does not answer right away. If he does not answer on the third request were in his room shaking him like crazy only to be greeted with "I was tired and didn't hear you.".

We have had our confrontations with teachers - gym is always a challenge.

Just when we thought we had it down to a system and things went smoothly we went to the pump and it was like starting all over again. So here it is one year and one week - we have been on the pump long enough to work the advance features and actually know what they mean, we have won some battles and lost some battles. Sometimes I think we lost more than we won by just trying to keep harmony.

We have started to settle into a routine now. I have read the books and asked so many questions. We still find strips everywhere but he knows where his meter is most of the time. We have figured out the little things that make managing easier (using the same meter type in the car, at school etc.).

The numbers are looking better. We have been working hard to get him to take responsibility for his diabetic care - to date it has not worked being on the honor system with food or BG testing. So we watch and monitor and double check.  We find the pretzel bag empty, they extra pizza purchased at school, and we deal with it. We know that numbers don't rise and fall for no reason and he knows we know that. We check the infusion site and if that is fine we check the other things until finally it comes down to "what did you eat". Its easier now to get an honest answer. That is progress.

Some of the things we trusted him with other than carb counting and checking his own BG correctly were filling his cartridges. We thought that would put him hands on with control but soon found out that there were so many bubbles in the cartridge because he just did not seem to care that we took back that task.

As parents we all deal with teens with diabetes differently. Two months into the diagnosis is so much different than 6 months which is different from 8 months which is different to the first year. They all have things we watch for. We all have different ways of dealing with the anger and frustration from highs and the lack of sleep we all get. I have stayed on a couch near his room so many times because he chose to eat something totally wrong before bed and test over 400. 

I don't know if this is helpful or not. I know it might be less positive for those with teens that newly diagnosed for a few months but its the real world and something I wish other parents had told me - some tried but I chose not to listen and others only wanted to paint a positive picture which I understand. I am grateful to all of them.

I have a great team with an endo etc but none of these people have helped me more than other parents. They know the facts, figures but they do not see the 24/7 dealings we have to live with everyday. Its easy for them to say - he shouldn't have eaten ice cream and he or she really needs to exercise more but its another thing to see just how hungry your child is during a low or how tired they are when the BG bounces. We pick our battles and hope in a few years our children win the war. 

I have changed in this past year - I have gotten more involved in my son's everyday life - I have had to assume the role of bad cop many times and I do not regret doing that in the least. I have gotten stronger and I have seen that my son will not go into a coma if his BG hits 400 once or twice. I have seen lows and have dealt with them.

With all of that I certainly hope year two brings about some semblance of diabetes management being just something we do and not the main part of our lives. I guess in 11 months 3 weeks I can report on that. 

Hi everyone!

Thank you for posting this...it has been a difficult year.  My son Ryan was diagnosed last August with Type 1 diabetes, and I have felt like I've been on a roller coaster ever since.  I feel like all I ever do is remind him to check his sugars, count  carbs, and most of all, tell me the truth!  It's like pulling teeth sometimes! While I am very proud of how he has handled his diagnoses, I just can't seem to get through to him how important it is to maintain his sugars.  I worry constantly about him.  He's 14 now, and we've just come back from the doctor this morning with news that his A1C counts are up.  I can see that "whatever" look in his eyes, (I'm sure you all can relate), and I feel like I haven't done my job properly.  

Today, I am just downright frustrated.

Tricia 

Parents, I joined this group because I was one of those kids, diagnosed when I was 12. I am now parent to two young adults, so I have also experienced life with teens. I truly believe that a big part of the problem with teens who are type 1 and parents is exactly what you are writing about: they either don't test or don't tell the truth about the numbers. I think it is really, really very important to understand what the root issue is for us type 1 people: feeling of failure and shame if the levels are not perfect when we test. One young adult type 1 with whom I emailed for a while as team members of the JDRF Online Diabetes Support Team once emailed to me that "type 1 diabetes is the only disease whereby a normal working organ (pancreas) is replaced by guilt." Strong words indeed, and beautifully written.

It is inevitable that our numbers are going to fluctuate all day long. We do have to test and adjust things, for there is no such thing as perfect control in our case. We can't lock in place many of the issues that affect our numbers, things such as amount of activity, staying up late to do assignments (yes, loss of sleep affects numbers, either because we are burning more energy while staying up instead of sleeping or because our bodies are putting out cortisol stress hormones as a result of not being able to sleep), hormones, viruses, and even how fast individual foods digest (if they don't digest exactly at the same rate as our insulin's peak times, then our numbers will be off for a while until either the insulin or the food, whichever is slower, catches up).

Your kids' numbers are going to go up and down. All type 1 people deal with this, and it is more of a problem during the teen years when hormones and activity levels fluctuate wildly. My levels do this also, as an adult, but have certainly settled down some since the teen years.

The point of all of that is that when teens see numbers that are not in that perfect ideal range, they feel like they did something wrong. The bigger of a deal that parents make over this, the more likely the kid is to not tell the truth or to not test (ignorance is bliss). I felt the same way for years. Doctors add to this issue because they tend to make the teen feel guilty if the a1c levels are not good.

From a parent's point of view, I can understand both sides. It is extremely important for kids to do the testing and to adjust things. But how to avoid the kid feeling like a failure because he or she has an awful number on the glucometer??? I discovered a number of years ago that I needed to look at the numbers merely as scientific information with no "good" or "bad" attached to them. They are simply numbers for me to react to. This is the way that the brain-pancreas partnership works in someone who is not diabetic -- when the numbers start to drop or rise out of the healthy range, the brain simply tells the pancreas to produce more or less insulin. No guilt, no "you are doing this wrong" -- just a signal to the brain. I truly think that if parent and child can agree to try to learn to see the glucometer numbers the same way, as neutral but essential information to react to, then the guilt and shame and avoidance may dissipate. I think that instead of focusing on what that number was, the real key is to ask your teen: what do you need to do to adjust things? Make sure that they learn to see the number as something that instigates adjustments rather than the number being the goal.

The natural result is that when adjustments happen often, the numbers will be normal more often. What I tell my endocrinologist is that if he looks on my glucometer, the times I test are the times that I suspect that my numbers are off-kilter, not necessarily at meal times when we want them to have settled to a normal range. My a1c stays close to 6, but if you look at my glucometer readings, they are often out of the normal levels. If I feel funny, I test and adjust with food or insulin. It becomes a life of frequent adjustments rather than thinking that any type 1 will ever be able to normalize levels all the time.

Maybe approaching your teens with this attitude about numbers may help their own feelings about the numbers. It really is a big emotional thing for all of us type1 folks, that feeling of having not done a "good" job when our numbers go up or down too much. I thought that this may help some of you parents. My own incentive is not preventing complications so much as feeling good -- we just feel better when our levels hit that normal range as often as possible. That will be incentive enough. Your teen will be able to think better, to play sports better, etc. (or whatever is important to them) when their levels are normalized. That kind of incentive may be a helpful one to use in discussions with your teens. We type 1 diabetics become very attuned to our own bodies and we notice the difference in how we feel when levels are up and down.

Thank you so much on the perspective. It is invaluable. I am wondering however, when you (age) reached the point where you did not see your parents as people who were trying to make your life difficult and really cared about your T1.  

I think that this is different for each child, and I think it directly correlates with whenever that child matures beyond the natural rebellion age. For me, I think it was during my late junior or early senior year in high school. But I am parent to two children, now grown, and this "my parents are the enemy" attitude was part of their rite of passage also, even though neither of them is a diabetic. I believe that the diabetes struggle is just something that a teen can use during their "I am trying to break free" years to try to exert their own independence more than other things. Control is such a big part of living with this disease, more than any other disease that I am aware of. Folks with thyroid issues find a regimen that is proper for their bodies and then take the same amount of medication each day and do fine. This is true of other diseases also. But diabetes is all about constant monitoring and control.

The child who is a bit of a type A may find this easier to adapt to than the child who is more free-spirited. I was a type A child, and so I never really rebelled. But for some kids, this constant checking and adjusting levels is much more difficult to pull into their lives than for folks like me. I feel for them, for this goes directly against what their personalities direct them to be.

And I know that you parents feel for them too. But you are wise enough to know that they MUST learn to live a controlled lifestyle or suffer grave consequences. The kids cannot see the consequences. We know that is true of teens. So parents are in this daily struggle of how to help motivate without causing real battles. I wish I had a miracle answer. You folks are the real heroes in the story of Juvenile Diabetes. At some point, your children will mature and will be able to see this.

I heard a parent counselor once make a statement that it is up to the parent to "pick our battles wisely." I remember thinking that this was fantastic advice, and I remembered it often during my own teens' more rebellious years. Some things were open to compromise or negotiation, while others absolutely had to be done my way. Each time there was an infraction, I would try to stop and think about whether this particular one was one that I should make into a battle or not and I tried to compromise every now and then in order for them to realize that I was listening to their own wishes as well as to mine.

I do remember feeling that my mother was a worry-wart, and because I felt she was over-protective, I can remember trying to hide my numbers from her, not volunteering anything unless she specifically asked, etc. My best advice to parents is to pick your battles wisely over specific issues, and to also try to keep a line of communication open. To every now and then ask the teen what he or she is feeling, ask him or her whether he or she feels that you are being over-protective, and then explaining your own thoughts on the matter. No judgments on either side, just explanations. Try to have a creative thought process, like a brain-storming session: how can we as a family do this better? Get the teen's input and your own and see if the two of you can work out compromises that are agreeable to both. I think that it is very important to do it this way in order to help teach the teen how to think on his own about how to better take care of himself. Also, if something is HIS idea, he cannot really rebel against it too much. Then, regular follow-ups to see how both of you are doing.

As I read some of the comments from the kids on this forum (in other groups), I do see that many of them feel that their parents are the enemy. Maybe creating a feeling of partnership rather than it being a case of "my parents are telling me to do this". How? Each family has its own dynamics, so I can't answer that. Maybe some sort of reward system or maybe just conversation over a diet coke. But it needs to be two-way, and the teen needs to be asked to come up with his or her own solutions (with parent's possible gentle shaping or some parental ideas thrown in) so that he or she sees the routine that is decided upon as his or her own idea. It comes down to being taught how to problem solve, which is essential in life as well as in diabetes management.

I can't thank you enough for sharing this - I have felt so alone in my role.  I really don't have a support group in my area, and my son is (and has never been) the most communicative individual.  

We all just love our children so much, and want the very best for them in life.

Thank you, thank you, thank you.

Tricia