Hello everyone. My name is Wendy - I am a newbie to this site and I am very glad to have found this forum. I am mum to a 14 year old Type 1 who was diagnosed two and a half years ago. .These past two years have been a huge learning curve for me, my daughter and the whole family. (I am married to Andrew and we also have a 22 year old son.) Sometimes I tend to let my thoughts roam around my head and isolate myself - I have found diabetes to be a misunderstood and underestimated condition. So I turned to the internet to try to connect with others. I started a blog, Time for T. Yesterday, I was writing about some of the frustrations I feel when friends or acquaintances rush in. This is part of what I wrote:
“I find it frustrating when well meaning people offer glib and simplistic advice on a subject they know nothing or little about. I know they all mean well. I try to smile through it and take the good (that they are interested and concerned.) I even try to tell them a little bit about what it is like to parent a T1 child. Sometimes though the comments that say " Oh well, type 1 , type 2 same thing” or “she’ll outgrow it” or " does she still have to test and inject?" or “but she is so skinny” make me feel more isolated. I am getting better at laughing off ignorance - there is so much I don’t know, I can hardly be critical of others. It has made me more sensitive in my own language use though - I try not to presume other people’s feelings and ask rather than express an opinion. So that’s good!"
The blog is probably mostly just a personal space - I chat about Kate’s friends, some school experiences, the horror of her diagnosis (her glucose reading was 45), how resistant she is to the pump and other such topics that are important to me. Please have a look if you are interested, and feel free to make comments about anything! You can find it at Time4t1.blogspot.co.za
From the address you will see I live in South Africa (Cape Town). Andrew and I run a small electronics company, and our son is about to start his masters in mathematics. Kate has just started high school and we are quite a creative, whacky bunch!.
I do think a teenage experience in today’s world with T1 is entirely different from other perspectives. Is your daughter still on injections? Have you both considered pump, CGM or other technology options or is your current approach working well for you so far?
Yes my daughter still uses pens and finger testing. For some reason she is averse to the pump and cgm. She tried one for a short while, but did not enjoy the experience (She said she felt less human using the technology) I was hoping she would try the new Libre sensor for CGM - no more finger pricks, but she is adamant that she won’t at the moment. The pens do work well for her on the whole.
If the pens and fingersticks are working then stick with that.
Forcing a teenager to do something they absolutely do not want to do carries significant risk in terms of parent-child relationships. You don’t have to look far to see many examples of how that can potentially turn out badly. (Without even introducing T1 into the mix of things.)
We use the Tandem t:slim X2 pump and the Dexcom G5 CGM. For us it works well.
If you both find the pens and fingersticks are working - go with that. There are many people on these forums who do exactly the same as you are doing. This is not a “one size fits all”. There are many options. If only one path was the true and correct path then we would not have nearly so much to discuss all the time.
Thanks for the encouragement! Yes, we will stick to pens and strips for now - it’s good to know what tech is available, even if she doesn’t use it.
My name is Elena and I’m from Texas, USA.
I diagnosed at age 4. I am now 44. I completely understand how you feel. I have come to use these times of well meaning interjections from people who do not know better, as educational opportunities. I have to put on my authoritative voice and speak quite matter-of-factly.
The world does need DIABETES AWARENESS. I’ve met many parents of diabetic children, as well as fellow Diabetics who have found a great passion and purpose in spreading this awareness. I’m excited about your blog and see it as an opportunity to educate others.
It is this process that ends up saving people’s lives. Sadly, many juvenile Diabetics go undiagnosed and pass away. This is an opportunity to put out the proper information and encourage others to do so.
Thank you for connecting with me. I am going to practise my authoritative voice so that I am ready for next time! It is so encouraging to hear other people’s stories and to feel less alone. Please feel free to tell me if you think the blogs are useful or not - I am always open to discussions and very aware that I am relatively new to the world of diabetes! Best wishes to you, Wendy
I have three children. My middle child, Caleb, was diagnosed at the age of three, is currently 14 and is also starting high school. I’ve learned so much from people who understand - most of whom I’ve met on the internet. I think these connections have dulled the sting of the misinformed comments we come across from time to time. I too have developed an increased sensitivity to my own behavior. I know I didn’t know anything at all about diabetes until I needed to, and I’m still uninformed about so many other issues - health and otherwise - that other people have to manage every day. Keeping that perspective makes comments more bearable and I try to inform when I think it will be productive.
I’ve heard great things about the Libre - we have members here who are users. I understand not wanting to be attached to devices though. Like @Tim35 says, diabetes is not one size fits all. When Caleb was diagnosed, he seemed so relieved when given the opportunity to make any choice on his own, no matter how minor, after having so much change forced on him. I definitely agree that success is more likely for any kind of therapy change when it’s initiated by the user.
If you haven’t already, you might want to check out another recent post - New and scared dad - #11 by scorona. Lots of great feedback along similar lines to this convo.
Hi Wendy! I also have a 14 year old (boy) starting high school who was diagnosed about two years ago. I have very similar feelings. The “she’ll outgrow it” comment is particularly stupid.
For us, 14 is a tough time for us parents, because my son is taking over almost all of the diabetes decisions, from the technology he will use, to his approaches to insulin dosing. While he will still talk his decisions over with me, it is usually after the fact. While my wife and I want to help him lighten the load, he is running in the other direction and taking care of things for himself as he sees fit.
Thanks for the welcome and for introducing yourself. High school has been quite a leap in responsibility (diabetes speaking) from Junior school for Kate. The teachers are not quite so " mothering" . She has always been rather independent, so is coping well. Work load and busy schedules do make for interesting glucose numbers at times though. I hope Caleb enjoys his new school.
The Libre looks really good. But we will wait until Kate is ready. She is dealing with enough at the moment, and the tech scares her a bit.
Hi Chris - yes this new teenager independence stuff can be such difficult thing. I am so proud of Kate and the way she handles her diabetes, and yet I am very aware she is still a child and we are the responsible adults!! I have always tried to give her as much independence as is safe - sometimes it feels like a tightrope balancing act! Does your son use a pump? Best wishes to you and your family
Yes Wendy, we use the Tandem X2 pump. It is definitely a balancing act. For us the bit of technology that makes a difference is the Dexcom with share enabled. That lets his mother and I “peek” into how he is handling things without asking, since it seems the asking usually triggers the frustration.
Yes, we bolus from the Dexcom probably 2/3rds of the time, and blood sticks the other 1/3. We will also be applying the update, and look forward to having another point of duplication in the system.
Just as an FYI. Dex Tech Support told me that having the three devices (pump, receiver & phone) paired with the G5 transmitter will cause the battery to run down faster. Whether it will run down sooner (w/ three devices) than the 3 months (and 3 weeks) is an unknown.
I do not plan on using the receiver continuously but plan to just use it at night and when we are in the car together (easy for me to glance at the receiver).
Other times I will power down the receiver such that when it happens to be in range of the transmitter, it will not be using transmitter battery power when not needed. And I will see how long the transmitter battery lasts.
Wow, I feel like I should give you my mother’s phone number! I was diagnosed when I was 11 years old. At the time, I did not realize the emotional turmoil this would put my mother through. Years later (on the cusp of 30) we talk all the time, and she shares with me what it was like. (We are very close, and always have been.) At the time, we were both so frustrated. I was little gothy punk kid so I often blew it off and got angry. Everyone was just an idiot. My mom was emotionally hurt, frustrated, and sad, and she had no one to talk to. Not to mention, 11-17 were probably the roughest years to try and get your kid to take care of their disease, especially when they were in major denial over it. It will take time, but years down the line, the things people say will roll right off your shoulders. If you’re not ready to laugh about it, then don’t. People say these things because they don’t understand. Someone might understand the basic mechanics of the disease, but they will never truly understand unless they have lived with it. Sometimes people say these things because they don’t know what to say. I still get annoyed, but I only spend two seconds on it. People don’t know about a disease unless they have a good reason to know about it. Though it never ceases to amaze me how people don’t stop for two seconds and use logic when saying something, or how about just saying, “I’m sorry, I don’t know much about diabetes,” before they start talking.
I’m actually going to tell my mother to check out your blog, because I think she would relate to you very much.
Thank you so much for writing this. I would love to connect with your Mom. It is so scary at times - actually most of the time- and, as you say, unless you’ve reason to know about diabetes, it remains a vague notion to many people. It is lonely being a parent - her friends’ parents don’t really “get” it. Kate very much knows her own mind - which is good that she is a strong female! - but does add to my dilemma at times. She is sick at the moment, with a bronchial infection. Her glucose levels are too high. Let’s hope the antibiotics work soon. Please keep in touch!
