My daughter is 9.5 yrs old. She was diagnosed at 2.5 yrs. Type 1 Diabetes is all she has ever known since she can remember. She understands what her blood glucose values mean (knows when she’s low or high). She knows that she needs to drink a juice or eat if she’s low. She knows that we usually make her wait to eat if she’s high. She participates in her care, but my wife and I mostly manage her Diabetes right now.
How much information about the long term risks of Diabetes should we share with her at this age? Should we be upfront and tell it to her as it is? Should we wait until she old enough to research and find out on her own?
I’d say if you have everything under control at the moment and she is doing as much as she can be doing for herself at her age, I would leave the details out. Theres no reason to worry her unnecesarily at the moment. There will come a time to bestow all the knowledge and details upon her because knowledge is POWER. But as long as things are good, considering her age, that time can probably wait a bit. Questions should always be answered though.
Thats an opinion of a parent with diabetes who does not have diabetic children. If I was walking in your shoes I may be asking the very same question, bro.
If you think she know everything to keep her safe at school then each week give a little bit of more info not too much where she doesnt do good in school but just enough where she can process the info…
I was diagnosed at age 7. Kids pick up stuff whether you intend it to happen or not. Either from the media, people’s comments, or whatever. I know I did. Just let her know that she’s doing great, you love her, and have confidence in her.
My daughter is also 9.5 and was diagnosed 2+years ago. I haven’t spoken to her about the concept of complications other than in a broad sense - to stay healthy, we have to do our best to keep the blood glucose in range. That kind of thing. She hears/reads about complications on occasion (on the radio, from ‘well-intentioned’ people, over my shoulder in books) which generates the occasional question. I reassure her that good care means that complications are very unlikely. She does understands that diabetes is a life threatening disease for sure. Much like your daughter, Caitlyn is involved in her own care to the extent that she tests her BG, treats lows, commands her pump (did her own shots about 1/2 the time), manages her diabetes at school (recently asked me not to come at lunch anymore). This participation gives her some control which is something she is wanting right now. At this time she’s not that interested in knowing more about complications and I respect that. When she asks, I’ll tell her and find age appropriate material (books, websites) to help explain this side of diabetes. All the comments above are great!
I am 25 and I was diagnosed at age 4. When I was a kid I knew that if I didn’t take care of myself I would get sick, but it was not until I was older that I started to understand what kinds of things could happen. I think it is most important to be there to answer any questions, or help your daughter find the answers rather than scaring her with all the risks. It is great that she is learning how to take care of herself now so she will be able to continue the good habits as she grows up and wants more independence. My parents always taught me how to handle my disease and pushed me to understand the care rather than the complications and I think that has helped me more than I could ever thank them for.
I don’t know what it’s like to deal with a kid with diabetes, but I know what it’s like to deal with kids. In my experience you can’t go wrong with telling them the truth. They will absorb as much as the need for the moment, even if it doesn’t look like they’re absorbing anything at all.
I am not a Mom …my thoughts go out to you and your family…however would it be time to ask ., if she likes to go to Diabetes Camp one summer soon ?
I understand possibly the BEST place to be for one week or so …and am sure some of the discussions will surface .
Interesting question Mike. I was diagnosed at age 12 or 13 (I am now 41) and remember that the hospital diabetologist I was under at the time was not happy when I started talking about the kind of “problems” that diabetics get. I can’t remember where I picked up all this information, bearing in mind that this was pre-Internet days. Posters, leaflets, booklets? I certainly wasn’t told anything by the medical profession, nurses or my family (Mum is T1 too), friends or teachers. Neither did I trawl through books in the public library to elucidate all these “secrets” – not that a public library would hold in-depth books on diabetes and its complications anyway. Today all this information – be it reliable or suspect – can be easily accessed on the Internet and not only that, the doctor-patient relationship has also changed immensely since I was diagnosed. When I was diagnosed my diabetologist would have received his medical training in the late 1950s early 1960s I guess and his teachers would have been practising medicine in the pre and post-war periods where doctors, like teachers, lawyers and policemen, were seen as semi-god like creatures.
What I do think is important is that you and your wife feel comfortable talking through issues with your daughter. If you’re not comfortable, your child will sense your discomfort and I imagine that this could put unwanted pressure on her: her worrying because Mum and Dad are worrying.
I was diagnosed when I was 7, and due to a high HBA1c a year later (I think it was 9.8), I was told by a doctor that I needed to grow up and stop acting like a child or I would die…which is just lovely when you actually are a child. He then made me list all the possible complications of diabetes, and when I cried, he told me I needed to accept the fact that if I didn’t take care of myself, those complications would be my future. 14 years on, and that still makes me very angry.
However, I was very lucky to have parents who knew how to deal with it. I think the best thing you can do is be honest with your daughter, but don’t make a big deal of it. I wouldn’t advise sitting down and having a serious conversation about it, but rather let her ask questions and answer them honestly…but reassuringly as well. Hope that helps in some way!!
There have been much change on children nowadays. Sometimes it will even surprise us on what they know and on what they can do themselves… Given so many venues for information…it is best that a child knows what is the truth and correct to the best of their comprehension level. The influence of media, peer groups, etc. is so resounding. Being parents, their own children will trust them more.
When I was young, I was asthmatic so I needed to carry an inhaler around. I was also restricted to do certain activities to which at first I didnt understand. I appreciated much when my Mom explained to me the reason why I have to take medications, why I have weezing sounds at times, why I have difficulty breathing on occasions. She taught me what not to do or avoid and the reason why i have to comply. At the same time she built my self confidence towards activities I can excel on. I know…its not diabetes. But at that time, at an early age, I learned to appreciate the value of taking care of myself, whats going on in my body, that I am not alone, and what I can do to the best of my ability.
Yes, I agree. Back in the 60’s I was told by a doctor I would die before the age of 20 if I didn’t “look after myself”…I was told I could never have children (I have two) and I was also told that I was going to go blind. Such horror stories, which of course you are in denial about. I remember saying to myself “that will never happen to me”…well I am still going strong - 55 years with D…
She should know how to do her stuff and it sounds like she does. I have had kids about that age withe T1. Two to be precise. A lot of the complications stuff will have little or no meaning to kids. I think complications falls into the category of one of our fears.
My two cents is to teach care. Raise the whole child not just the diabetes part. Learn to eat pizza.
If you can get her to CWD’s Friends for Life by all means take her. There is an amazing liberating thing that happens for kids when they are wound three thousand or so other kids and families that also live with diabetes. Does wonders for mom and dad too.
Personally I would go into great deal about hte complications. It might just give your daughter one more thing to worry about right now. She’s a kid… let her be a kid. By the sounds of things she’s knows enough to take care of herself and realizes that if she doesn’t she will get sick. That’s all she needs to know for now. She sounds really smart and when she wants to know she’ll ask or do the research for herself.
Why don’t you let her know that you’ve got a lot of information that she’s going to need as she grows up and starts to manage her diabetes herself, and then ask her to let you know when she wants to learn it. That way, if she’s ready to learn about this stuff, you can tell her, and if she’s not, you don’t have to traumatize her or scare her.
I am with several others here…she is doing a good job of managing what she has done thus far. She no doubt has access to the www. and maybe has already learned somethings about diabetes herself. I would say, she has enough to deal with at this point. If she starts getting slack or having difficulties with her diabetes (it’s tough being a kid and teen with diabetes) then you will answer questions as they come. To me it’s like having the sex talk, you work into it gradually, and then … you give them the whole story. Allow her the ability to ask you questions, be open to the honesty, and then as things come up, tell her what she needs to know. Trust me, those questions and topics will come up…it’s inevitable.
I would say tell her everything as fast as you can. Diabetes is a personal disease, my inclination is for a child do take responsibility as soon as possible, and as much as possible. Now having said that, I also suggest that as she turns 12 -13 you strongly consider therapy for her. the point will come when she will be feeling as if the disease is a burden ( I have been for 35 years and I feel that way) when that occurs, she will be able to use a professional to heop her cope. I wish my parents had done therapy when I got it at 17, and I really suggest it for everyone, especially kids.
I was diagnosed when I was 8 years old, I am 46 now. I don’t think you should tell her about the complications now, she has enough things to worry about. As she gets older you can talk to her about it. When I was in my teens I think I had the worst time paying attention to my diabetes and that probably will be a good time to talk to her if she having problems.I hope that helps.
