For those that don’t know, or need a refresher, I am a father of an 11 year old type 1 girl. She is in the 5th grade, and we are about to enter our fourth year as a type 1 army. We are a family, mom, dad, daughter, son, 2 black labs, and 1 white maltiterripoo. We are all involved in my daughters diabetes care. I have mentioned here before that this disease is a family disease. We are all affected in some way, even my 5 year old son. This post refers to a question I asked as we start heading into her teen years. She is my daughter. When she gets in my car, I ask her if she has her seat belt on. (I ask my wife too). When we take her horseback riding, I make sure she has her helmet. Same thing when we go bike riding. And when she is home, we check her blood sugar. We make her dinner. And we add up her carbs for her. I remind her to eat her veggies. I ask her to pick up her shoes and socks. How long will that continue? My mom still checks on me and asks how I’m doing. She is my daughter. I will always check oh her and feel a sense of responsibility for her well being.

She is starting to get older. She is starting to take on more responsibility. She wants to be more involved with her diabetic care. We are allowing her some, but it is all supervised when we can. We are also providing her with tools that allow her to have a little more control while she is at school, like her CGM. She has a BG tester with her at all times, and she can test when ever she feels like she needs to, and she has a CGM that helps her make decisions based on the data she is seeing. But when she is home, we still handle most everything. She likes to add up her carbs, test herself, input the numbers into her meter, but we still keep an eye on what is happening. She is a child of technology, she flies through input screens, has the button pushing down to a science, so I always ask to verify, as the One Touch meter makes it real easy to fly right past 6 units of insulin, straight to 12 units.

So why this post? Because I have been wondering about what other parents do. We, as a family are VERY involved. To the point that we have been mocked. We hear that we need to give our daughter “more freedom”, or “you need to allow her to be a kid”. We are stifling her. She won’t learn about her own disease. But I know we aren’t alone. We have surrounded ourselves with very similar families. I believe a lot of the mocking is so people can justify their own decisions. I say to each his own. If you have a question or want some advice, please ask. I will explain to the best of my ability why we do what we do. But if you want to tell me I have given up my life, I’m coddling my child, or something along those lines, keep it to yourself. And as for letting her be a kid, or have freedom, well, by taking on some responsibility, that is exactly what we are doing. You see, she will have this for life. This isn’t something she will grow out of. There may be a cure, there may not, there may be things that make living with type 1 more convenient or easier, but as I see it, she will have the rest of her life to work on those things, for now, we can help her as much as we can. That includes checking her at night. She doesn’t wake up from her lows or highs, and I don’t want a groggy 11 year old trying to fix a high, so we still check. My wife sets an alarm for at least twice a night (we test when we go to bed, then twice during the night, and then when she wakes up in the morning) assuming everything is okay, more often if required due to a low/troublesome high, and I wake up and check when Raven alerts.

Too much? Maybe. But I don’t care. I refuse to be judged because we are TOO involved. There seems to be a faction of families that are letting their children take on more and more responsibility. That is fantastic! If it is working for them, more power to them. We are not there yet, and I’d imagine that as long as she lives with us, we will be at least asking her to test, reminding her to wash her hands, making sure she boluses, checking her at night, and occasionally glancing at her meter to make sure she really does what she says she is doing. I don’t feel comfortable any other way. It’s how we are. I make no apologies. If you don’t do the same, I promise you, we can still be friends. But no amount of people telling me “dead in bed” isn’t real, or hearing other people say “my endo tells us we don’t need to check at night”, or “my child is responsible for all her care, after all, it IS her disease” will change that. Our way of dealing with this works for us. And a funny thing is happening along the way. She is learning. She is understanding. She is figuring things out. As for when she moves out on her own? I still plan on being just on this side of obnoxious and intrusive. And I will insist on having spies. And ninjas. And she will have a dog/DAD that can communicate with me, like the dogs from UP!

See, this story is just as much us being ready to let go as her being ready to accept it. We occasionally find signs that concern us, a candy wrapper stuffed in her lunch box (I was throwing it away for a friend), she didn’t eat her sandwich because she had a friends cookies (all though not happy she didn’t eat the sandwich, I was happy she knew to exchange carbs), and often times she doesn’t seem to think testing is more important than X-box while 2 labs are alerting.

There have been some pretty powerful stories recently about things that relate to situations like this. I will share those here:

Our DKA Story

Sweet 16 News Blog

Ninjabetic

On Monday, I posted something like this on our Facebook page. The responses were honest. Raw. Heartbreaking. And there were lots of pointers and tips and advice mixed in. We had people that were very involved, and people that were hands off. We had type 1’s that talked about how their parents handled them in high school. Some of the answers startled me in how I felt when reading them. Here is that post:

To the parents of type 1 kids in High School, just curious, how involved are you in the daily care of their diabetes. Are they responsible for everything? Are you still reminding them to do things like check and bolus, do you check them at night, do you maybe just check the history on their meter? How involved are you, and how responsible are they?
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  • David Watkins Given that Mike wasn’t diagnosed until the end of 7th grade, and given that that age is a bit, um, “difficult,” I had to constantly stay on top of things. Suffice it to say that I got quite a bit of calls from the school nurse and had to make trips ov…See More
  • David Watkins Oh, and by the way, we need a cure, damn it.
  • Kara Barton I like this Frank Wisneski. I’ve been calling the high school already today because we will be going to one that is not our home school for a specific program they offer so I’m wanting to make sure it will all work out with a DAD as well before I register her Friday.
  • Maureen Brown My son is 16 Dxd at age six. He has had D for a long time and still resents it. I think it’s a teen thing. I give him lots of reminders, still up at night for checks although I wake him and he is responsible for actually checking. I tend to micromanage, and I am a worrier so he gets fairly annoyed at times. Finding a balance between making sure he is healthy and safe as well as having his need for space is a challenge.
  • Penny Mackenzie-Belair Also, my friend, who is a high school teacher, has 2 students that are type 1 in her class. She has the students choose a buddy and they go to the office together. The diabetic students are allowed to eat or drink in class when the blood sugars are off.
  • Penny Mackenzie-Belair My grand daughter is in high school and she doesn’t seem to have a problem going to the office when she is having an issue.
  • Marty Buonato My daughter has just graduated from college, so over time (dx 5th grade) she weaned me off, though I still ask (much to her annoyance). I would say instead of having high school student go to the office to check, dose, or have juice, it’s important to get to a place where they are doign it themselves in the classroom b/c they miss too much school schlepping down to the health aide, when they know more than most medical professionals.
  • Kim Ellis Varonin I am a teacher and I have 2 students with Type 1 in my classes and at school they take full responsibility. They will test in class if they feel the need and I keep a stash of apple juice boxes for them if they are low and they will ask to go into my office if they need to inject insulin. They both keep extra supplies in the health office if needed.
  • Hannah Malone i was responsible for everything with disastrous results
  • Andrea Konig My daughter was diagnosed at age 13. She is 16 now and has become a role model and spokeperson for diabetes. She gives presentations on diabetes and holds fundraisers at her school. All her teachers and other students are aware of her need to test and eat during class and give accomodations when she isnt feeling well. When she was first diagnosed I was very involved with injectons, glucose monitoring and carb counting. Now that she is on the pump, she is much smarter with modern technology than I am. She will even call up Medtronic if there is an issue with her pump rather than turning to me for help. In fact, she doesn’t even like to tell me when her numbers are off because I worry too much. Sometimes I can tell if she is high or low because her mood changes but with teenagers, their moods are constantly changing. My best advice would be to be supportive but not intrusive
  • Tiffany Fahy In high school, I was the model diabetic. I tested all the time, ate when I was supposed to, because my parents were really supportive but not overbearing. It was once I got to college and my schedule wasn’t as predictable that things went downhill for a while. Not to mention being uninsured for several years puts a damper on how well I was able to care for myself.
  • Dana Nichole However, each child is different! I did go through a stage when I didn’t care and neglected my diabetes, but for the most part I did take good care of myself! Not all kids are that way!
  • Kim Wiley Stanley I am involved but try to let him do things his way. I check his dexcom during the night and do his carb counts for dinner but for the most part he wants to do everything himself. He doesn’t keep his numbers as in line as I would like but at this age I feel like I need to let him do things his way. He is usually high around 200 and I will usually suggest a correction if he gets higher then that for any length of time. We do have rules though, I won’t back down from wearing his medic bracelet and he has to carry his bag everywhere especially school. Fortunately his school is good and he can whatever he need wherever he is. Will is almost 15, a freshman and diagnosed 1/27/13
  • Cat Powell That s awful Lydia would have found new doc for sure
  • Lydia Duncan My dad was t1 diabetic. He was 8 (1954) when he was diagnosed after falling off a tire swing. This is back when they had to sterilize glass needles . I think he resented having it. Ate a lot of stuff he wasn’t supposed to. Only took one shot in the morning . Had to go to hosp several times due to low blood sugar. @ some point he had couple of toes removed then a couple more ( same foot ) when that wasn’t good enough his leg was amputated below the knee. I called him stumpy he always got a kick / laugh out of that. . Over the years he had problems & died from complications of / from diabetes. I had 3% chance of getting diabetes. I was diagnosed @15 on daddy’s half birthday… Family & doctors always remind me , take care of yourself or you’ll end up like your dad. My daddy didn’t think he could have kids since he was diabetic – I was told the same thing (1996) But my mother got prego anyway & she’s resented me my whole life. Since everything is my fault. Not really my fault she gave birth to me& kept me. but I’m glad for my daddy. He wanted me& was my best friend.( we moved a lot, difficult to keep friends)
  • Lydia Duncan I was 15 when I was diagnosed if too high or low strict rules to stick to. & dr would adjust as needed. Of course everything regarding diabetes was my fault if too high/ low my fault. I was too fluffy ( haven been thin since preschool? Maybe never). Exercise more eat less tho that would cause low bs. My fault again. My dr was hell bent on me joining Jenny Craig . Didn’t cuz couldn’t afford it & dr wasn’t gonna pay. Only after 15+ years I was allowed to adjust my insulin amts as needed
  • Lydia Duncan When u was in middle school/ high school ( I graduated in 99) my mother would ask ask if / remind me to check my blood sugars. I had to hide of course. So I went to the nurses office to check & if low the nurse would help. Sometimes to remind me to have a snack – I had juice boxes etc in nurses office. Or further help as needed .one day I remember I was on the bus on way to school feeling low, by time I got there my bs was 65& took a long time to get up to satisfactory levels & sent to class. I only checked blood sugar & or ketones when I was high. If felt low or high while in class I would raise my hand & ask the teacher if I could go to nurses office to check blood sugar. Sometimes another student would walk with me but not always.if felt normal I only got to check @ lunch time. Nurses office was clear across the school from lunch room leaving almost no time to eat.( school of 2000+ kids= big school) Was supposed to get out if class 5 mins early to go check but didn’t always work out or wasn’t allowed. I was jealous if another diabetic student. He didn’t have to go hide when do blood sugar checks he just did them in class like no biggie.
  • Erin Ahern My daughter is almost 16. Very responsible. We are in Texas so we have nurses in all schools. She keeps supplies in there. She is responsible at school. We have a 504 plan for protection allowing her to take care of herself check blood sugar drink a juice etc. she was diagnosed 5 years ago. She was almost 11. She has been very responsible from the day she got her pump and continues to be. She has celiac so I don’t have to worry that she will just eat anything because she can’t. I’m still reminding at home to bolus check levels make sure she has enough strips etc. she does her own sites in the leg withy supervision. Anywhere else I still do them. I check on her at night if she’s low before bed. I can usually tell if she needs to be tested. But every time I’m up I check on her. Probably always will.
  • Jenn Allmon Like Hannah, I was responsible for everything – with not quite disastrous results, but not good ones either. However, I was diagnosed at 15 and I think living with it for basically your whole life would make a difference. As a teen, I resented everything I was supposed to be doing.
  • Dana Nichole I was responsible for almost everything at 16. My mom still made sure I was checking my BG and went to the doctors with me.
  • Alicen Kovacic Aaron is 17 and was diagnosed 8 months ago. Although we keep a container of supplies and sugar sources and insulin at the school’s health office, he constantly carries around a “satchel” with everything. He is allowed to test in class and keep snacks. I personally check his BG before I leave for work in the morning and in the evening. We don’t do middle-of-the-night checks but I’m sure that will change once the honeymoon is over. I also have to check the history of the meter. Yesterday was a battle when I found out he there were only two readings for the day – when I checked him before work in the morning and before he had dinner. Ugggg! I let him spend the night with friends, but he is required to check in with BG readings.
  • Robin Witten O’Brien Last summer I gathered all the school district paperwork for our daughter to attend high school (we are homeschoolers). I searched best and worst case scenarios for the 504 and IEP. I called the district to ask about questions and in typical bureaucratic form got limited answers. I talked with our daughter assuring her that between her wonderful medical staff (shout out to Dr. & Nurse C.) and us, the parents, her paperwork would allow as much freedom as possible to manage her diabetes. She hates diabetes being classified as a disability. We view it as horrid inconvenience, not a limitation on our life. She calculated how much time she spends doing the things diabetics have to do (glucose checks, injections, food/water intake, recovery time from a low, etc.) add going to and from the nurses’ office…too much time out of the classroom for her liking. She decided to continue homeschooling, planning on dual credit classes, and graduating a semester early.
  • Kim Van Tassell Venema My son is in the middle school/high school, and there are three T1Ds in the school. They keep all of their equipment/snacks/glucagon in the office, and at lunch they are responsible for going up to test. There is a para-pro who will check numbers in the their calendars every day to make sure they tested and to see how things are. She is also the one who calls when my son is testing throughout the day because of lows or highs, and she keeps him in the office if he’s too low until he is steady enough to go back to class or leave for the day. At home I remind him (he’s 12) about checking and blousing, and then we download his pump every two weeks to check where things are at.
  • Leslie Passwaters I know my husband was responsible for his own care and he didn’t do well with that. Ate a lot of things he shouldn’t (at the time he was not on the pump- 13 years ago), and didn’t check his sugar as much as he should have.
    If you have anything you’d like to add, we would love to hear it. How do you handle your type 1 getting older? How did your parents handle your disease? Do you wish it was different? Would love to hear what you have to say.
    Team Blackdogsrule

 

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2 Comments

  1. Rachel Gustafson

    Our daughter’s camp counselor overheard me asking my 9 yo daughter this summer “what was your blood sugar? what did you bolus? what did you eat? When did you bolus? Let me see the pump?” to which my 9 yo obliged as she was used to the ritual. The counselor, a college student in her 20s, said “I wish my mom still did that. It was so much easier then”. That struck me. Even though she will want more freedom one day, and already does, I need to be there for her always confirming, conversing and supporting.

  2. I was diagnosed in 1956 when I was a first grader. Control was not nearly as easy as it is today with pumps and glucose meters. I first took over control of managing my diabetes at age 11 as a result of attending diabetes camp. I and my best friend that I had had since I was 3, were college suite mates and she helped care for me. My son from a very early age would warn me if I acted “funny”, i.e. starting to have an insulin reaction. I worked with a great hospital crew that would warn me if I started having problems. I so appreciate all those who have helped keep a watch on me these last 57 years including one of my dogs who taught herself to alert to my lows I am so thankful that now we have meters so that I can check anytime I don’t feel quite like I should and I’m so thankful for a full medical team that educates and helps care for me.

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