Have we really just ignored this for 11 yrs.!

Coping & Support
1

Hello all,
I just need to talk… to anyone, no one, someone!
Just some background, I was 15 when I had my son. he was diagnosed at age 3 with T1D. if being a teen mom wasn’t hard enough, it had just got a whole hella lot more interesting. With that being said, no one in my family has T1D. So this was all completely brand new to everyone. I have just come to the realization just yesterday that all these 11 yrs we have “just been getting by” how?? no clue… but we know one with the same issues we go through. I know no other moms or dads, he knows no other kids his age that deals with T1D. I never went to any groups (I was just a kids myself and didn’t know how to drive anywhere) I never signed up for these sites with help… (I didn’t have a phone or computer) I mean I just now feel like I never did nothing to be involved how we have made it this far I just don’t have an answer. but now, I am at a point where my son just feels if he ignores his T1D it will just go away… he & I know this isn’t true but that’s what he likes to believe. its been this way for these almost 11ys that he has dealt with this. I guess I just feel so defeated…like a failure, like I should be doing more but what else? is it too late to get him involved. I have 5 kids total an not one of the other Four (without T1D) know anything about T1D. UGh, I am sorry if this post is all over the place… I just really have so much built up in my mind and I need to let some of it out. I just know no one that deals with what we do and its so hard… its just so got damn hard!!!

Thanks to anyone who took the time to read this. and again sorry.

2

Hi, I don’t think I understand what you mean when you say that you’ve ignored his diagnosis. Do you mean that he doesn’t take insulin and test his blood sugar? Or do you mean that you have not taken it as serious as you should. If you have type 1 diabetes, every day is life threatening. If his blood sugar is left unchecked, it can be deadly.
With that said, it’s good that you are reaching out now. Hopefully he has a pediatric endocrinologist that can get him set up with treatment. That is the first step. There are millions of support groups, facebook pages, and diabetes camps for support. I would start with your local JDRF branch office for help.
Good luck!

3

Hi, well this forum is a good place to vent and get support from others. My son has had T1D for nearly 5 years. Its very very challenging. Your pediatric team should be able to help you with advice and they are there to listen to you too. Log onto JDRF website if you can, there’s loads of useful info on there. You are not alone and I definitely find it very hard too. Best wishes to you!

4

Yes, I think I get where you are coming from now! I’m sorry about my previous reply. Yes, it is a hard road, especially when you don’t have anyone to talk to. My son was diagnosed when he was four, he is fifteen now. At first there were no support groups that I knew of either. You have to pursue a few and then find the right one for you. JDRF is a great place to start. Even if you have one diabetes friend mom, it helps tremendously to bounce things off, ask questions, or just vent. Beyond Type 1 is also a great website. Best wishes!

5

Hi @Dannie,

You are doing good reaching out now, and by no means are you a failure, Congratulations on bringing your son this far; you have given him insulin in the necessary amounts and obviously provided him with a reasonable diet. I was a bit older than him - yeah a revolting teen - when diagnosed and after about two years I wouldn’t even admit to anyone that I have diabetes, but I did continue to take insulin every morning.

You got it, 60 years later I’m now “paying” for not taking better care of myself but wishing that I had, Of course I went years without a blood sugar test at a hospital lab - home BG meters weren’t invented until 25 years later - and there weren’t support groups and no internet. But that is now all in the past after I really started paying attention to diabetes management about 35 years ago and now I’m a rather healthy 75 year old looking forward to 20+ miles tomorrow on my old bike.

Your note here says lots to me and I see where you are at and also see your real want to learn about T1D and help your son - this place is a good start and there are always folks here to accept your venting - and hopefully give you suggestions. You will see at the top of this pave an “EVENTS” tab - there may be something in your area; also on the main JDRF.org site you can search for meetings in your area; at a recent JDRF Summit I attended, most there were in their teens. The “RESOURCES” tab has lots of helpful information.

American Diabetes Association - ADA.org - is also a very trusted place to find information; and the ADA magazine, Diabetes Forecast, is full of valuable information, stores and resources.

We are here for you, visit often and see what you can - and vent whenever …

6

Hi @Dannie,

I made an error above. American Diabetes Association web site is: Diabetes.org

7

Hi Dannie,

Maybe I can help offer a different perspective. My name is Chelsea and I too was diagnosed with Type 1 at a very young age. I was two years old, almost 3, when I was diagnosed, so your son and I have that in common. I think being diagnosed that young presents some difficult psychological and emotional challenges. I don’t think a three year old has the ability to fully process that sort of life changing news and commitment.

I’ve had Type 1 diabetes for 20 years now, and for most of those years I really neglected taking care of myself, and only recently I have overcome my “demons” with diabetes and have started taking care of it. I went through the exact same thing your son is going through, I thought that if I just ignored my diabetes it would just go away, or maybe nothing would happen if I didn’t manage it and I wouldn’t have any consequences. I think what caused this sort of irrational thinking for me was that my diabetes was causing me a lot of anxiety and depression all growing up and I had a really deep hatred towards it that I didn’t recognize until just a couple of years ago. Avoiding and ignoring my diabetes was the only way I knew how to cope with my diabetes. Not to mention, if I never pulled out my kit and tested and got shots it seemed like diabetes wasn’t on the radar for anybody else and I could get by without somebody asking me how my blood sugars were and I could avoid a lecture or an uncomfortable conversation and essentially I would feel “normal” and just like everybody else around me who didn’t have diabetes.

I think for me, having more support could’ve been beneficial, I felt incredibly alone in a world full of people. Other people would try to understand what I was going through, and I can’t tell you how tiring it was having people apologize to me when they found out that I had diabetes, like I was dying or something - not the best moral booster. And I just want you to know that I don’t blame my mom. Now that I’m older, and I’ve become a mom just recently myself, I understand how difficult that must have been for her and how hard it can be to know the best thing to do and how to find support. As a diabetic myself I wouldn’t want to have to go through what she did with having such a young child be diagnosed with diabetes. I admire and congratulate her, and you too - that’s no small effort.

My advice would be to make sure when you talk about diabetes make it a positive, casual, normal sort of thing. Too often I think we talk about all the “don’t s” and consequences associated with diabetes, rather than you really can live just as normal as anybody else, and you don’t have to stick to some crazy health nut diet either. Of course that doesn’t mean you should go all out crazy on the junk food and sweets - but neither should anyone else! It’s not good for them either!
And as far as the lectures and negative stuff goes, basically less is best. We tend to remember and hold on to the negative in life, and for whatever reason, we too quickly forget the positve. So be positive often and trust that he can do it, and try not to be patronizing or condescending (not saying that you would be, but I always hated that). Also, don’t be afraid to talk to him and let him know that it’s okay to be bummed out about diabetes sometimes, but to not let it consume you - diabetes doesn’t have to be you, it can just be one small thing about you - you can be so much more than just labeled as a diabetic. I once was ashamed to say I was diabetic, and now I kind of wear it as a badge. It makes me unique and different, and although I struggled and had a really hard time with it all growing up, I am all the more stronger because of it now.

I am 22, I am currently pursuing a degree in Art Education, I worked as a lifeguard and swim teacher for the last 7 years, and I love camping and biking. I have a wonderful supportive husband, and a beautiful 3 month old baby boy. I am a diabetic - loving and living life.

All the best of luck to you Dannie, and your son. If you or your son feel like talking some more, I’d be more than willing to chat :slight_smile: Just send a message my way

8

Hi Dannie,

Maybe I can help offer a different perspective. My name is Chelsea and I too was diagnosed with Type 1 at a very young age. I was two years old, almost 3, when I was diagnosed, so your son and I have that in common. I think being diagnosed that young presents some difficult psychological and emotional challenges. I don’t think a three year old has the ability to fully process that sort of life changing news and commitment.

I’ve had Type 1 diabetes for 20 years now, and for most of those years I really neglected taking care of myself, and only recently I have overcome my “demons” with diabetes and have started taking care of it. I went through the exact same thing your son is going through, I thought that if I just ignored my diabetes it would just go away, or maybe nothing would happen if I didn’t manage it and I wouldn’t have any consequences. I think what caused this sort of irrational thinking for me was that my diabetes was causing me a lot of anxiety and depression all growing up and I had a really deep hatred towards it that I didn’t recognize until just a couple of years ago. Avoiding and ignoring my diabetes was the only way I knew how to cope with my diabetes. Not to mention, if I never pulled out my kit and tested and got shots it seemed like diabetes wasn’t on the radar for anybody else and I could get by without somebody asking me how my blood sugars were and I could avoid a lecture or an uncomfortable conversation and essentially I would feel “normal” and just like everybody else around me who didn’t have diabetes.

I think for me, having more support could’ve been beneficial, I felt incredibly alone in a world full of people. Other people would try to understand what I was going through, and I can’t tell you how tiring it was having people apologize to me when they found out that I had diabetes, like I was dying or something - not the best moral booster. And I just want you to know that I don’t blame my mom. Now that I’m older, and I’ve become a mom just recently myself, I understand how difficult that must have been for her and how hard it can be to know the best thing to do and how to find support. As a diabetic myself I wouldn’t want to have to go through what she did with having such a young child be diagnosed with diabetes. I admire and congratulate her, and you too - that’s no small effort.

My advice would be to make sure when you talk about diabetes make it a positive, casual, normal sort of thing. Too often I think we talk about all the “don’t s” and consequences associated with diabetes, rather than you really can live just as normal as anybody else, and you don’t have to stick to some crazy health nut diet either. Of course that doesn’t mean you should go all out crazy on the junk food and sweets - but neither should anyone else! It’s not good for them either!
And as far as the lectures and negative stuff goes, basically less is best. We tend to remember and hold on to the negative in life, and for whatever reason, we too quickly forget the positve. So be positive often and trust that he can do it, and try not to be patronizing or condescending (not saying that you would be, but I always hated that). Also, don’t be afraid to talk to him and let him know that it’s okay to be bummed out about diabetes sometimes, but to not let it consume you - diabetes doesn’t have to be you, it can just be one small thing about you - you can be so much more than just labeled as a diabetic. I once was ashamed to say I was diabetic, and now I kind of wear it as a badge. It makes me unique and different, and although I struggled and had a really hard time with it all growing up, I am all the more stronger because of it now.

I am 22, I am currently pursuing a degree in Art Education, I worked as a lifeguard and swim teacher for the last 7 years, and I love camping and biking. I have a wonderful supportive husband, and a beautiful 3 month old baby boy. I am a diabetic - loving and living life.

All the best of luck to you Dannie, and your son. If you or your son feel like talking some more, I’d be more than willing to chat :slight_smile: Just send a message my way

9

Hi Dannie,

Maybe I can help offer a different perspective. My name is Chelsea and I too was diagnosed with Type 1 diabetes at a very young age. I was two years old, almost 3 when I was diagnosed, so your son and i Have that in common. I think being diagnosed that young presents some difficult psychological and emotional challenges. I don’t think a 3 year old has the ability to fully process that sort of life changing news and commitment.

I’ve had Type 1 diabetes for 20 years now, and for most of those years I really neglected taking care of myself, and only recently I have overcome my “demons” with diabetes and have started taking care of it. I went through the exact same thing your son is going through, I thought that if I just ignored my diabetes it would just go away, or maybe nothing would happen if I didn’t manage it and I wouldn’t have any consequences. I think what caused this sort of irrational thinking for me was that my diabetes was causing me a lot of anxiety and depression all growing up and I had a really deep hatred towards it. Avoiding and ignoring my diabetes was the only way I knew how to cope with having diabetes. Not to mention, if I never pulled out my kit and tested and got shots, it seemed like diabetes wasn’t on the radar for anybody else and I could get by without somebody asking me how my blood sugars were and I could avoid a lecture or an uncomfortable conversation and essentially I would feel “normal” and just like everybody else around me who didn’t have diabetes.

I think for me, having more support could’ve been beneficial, I felt incredibly alone in a world full of people. Other people would try to understand what I was going through, and I can’t tell you how tiring it was having people apologize to me when they found out that I had diabetes, like I was dying or something - not the best morale booster. And I just want you to know that I don’t blame my mom, so you shouldn’t blame yourself either, or be too hard on yourself. Now that I’m older, and I’ve become a mom just recently myself, I understand how difficult that must have been for her and how hard it van be to know the best thing to do and how to find support. As a diabetic myself, I wouldn’t want to have to go through what she did with having such a young child be diagnosed with diabetes. I admire and congratulate my mom, as well as you too - that’s no small effort.

My advice would be to make sure when you talk about diabetes, make it a positive, casual, normal sort of thing. Too often I think we talk about all the “don’t s” and consequences associated with diabetes, rather than the fact that you really can live just as normal as anybody else, and you don’t have to stick to some crazy health nut diet either. Of course that doesn’t mean you should go all out crazy on the junk food and sweets - but neither should anyone else! It’s not good for them either! And as far as the lectures and negative stuff goes, basically less is best. We tend to remember and hold on the negative in life, and for whatever reason, we too quickly forget the positive. So be positive often and trust that he can do it, and try not to be patronizing or condescending (not saying that you would be, but I always hated that - mostly with my doctors). Also, don’t be afraid to talk to him and let him know that it’s okay to be afraid to be bummed out about diabetes sometimes, but just make sure to not let it consume you. Diabetes doesn’t have to be you, it can just be one small thing about you - you can be so much more than just labeled as a diabetic. I once was ashamed to say I was diabetic, and now I kind of wear it as a badge. It makes me unique and different, and although I struggled and had a really hard time with it all growing up, and still do from time to time now, I know that I am all the stronger because of it now.

I am 22, I am currently pursuing a degree in Art Education, I spent the last seven years working as a lifeguard and swim instructor, and I love to go camping and biking. I have a wonderful supportive husband, and a beautiful 3 month old baby boy. I am a diabetic - loving and living life.

All the best of luck to you , Dannie, and your son. I hope that maybe helps in some way, and if you ever have any questions you think I could maybe help with - feel free to send a message my way.

10

Hi Dannie,
I was a single Mom to my two boys when my 5 yr old son was diagnosed… 3 months later my 10 year old son was diagnosed. I was overwhelmed with responsibilities before the diagnosis- then it just seemed to be beyond overwhelming afterwards. As a Mom, you just want to do the best for your kids and it seemed like that was out of my control, as there was only so much time in a day. Believe me, to this day I still feel like I could have done more to keep their diabetes in control, but you do the best you can and soon they will have to pick up on what works for them to keep their blood sugars in line. My oldest is 27 now and did not like the way he felt when he didn’t do what was necessary. He is doing so much better taking care of his diabetes, eating right and getting exercise than I was able to do with him. My youngest is 22 and his blood sugars are all over the place. But he is also doing better than he did a few yrs ago and is healthy. Not perfect control as we all want, but getting better.
The fact you are even reaching out for help shows you are an awesome Mom, so don’t let daily setbacks get you down. Take one day at a time and the only break I ever got was when I took them to Lions camp in Kerrville, TX. Every summer for a month… they are well taken care of by Drs and nurses teaching them how to take care of their diabetes and they get to be with other kids going thru what they are going thru. Then when you pick them up you also are around other parents for the whole day and learn so much. I got some time for myself, but I always felt guilty that I was able to have a break from the diabetes, but they didn’t.
Contact a local Lions Club chapter and they are so helpful to get you connected. It’s free too, otherwise I couldn’t have afforded it. I hope this helped, sometimes it just helps to know you are not alone in this! Amy

11

Hi, I kind of know what your going through. My daughter is 18, and was diagnosed at 10. I was lucky as I found JDRF!! They(and our diabetes educator) helped, and continue to help us. I believe they have a mentor program where someone checks on you and helps you get through this. There is also this wonderful lady named Meri and she has three type 1 boys. It is called Our Diabetic Life. It never fails when I’m having a hard time with my daughter (who now wants to ignore the fact that she has diabetes) she will post something and it feels like she is looking in my window!! They have helped me, and saved my sanity more than once!! Sorry to go on and on. If you need to talk or vent we are always here!

12

I was diagnosed when I was 4 so now I’m 13 and it’s been 8 years and you know what, we are still normal! I totally understand not only going thru school but it’s hard being a normal kid in a school!

13

I was diagnosed in the UK when I was 18, typical juvenile Diabetes. It was 2 days before Christmas so I felt like I couldn’t really enjoy myself. And that has lead me to now never really looking forward to Christmas until we had our son.

These kind of things can weigh on you but back in the UK I was very lucky to have an excellent, professional support network from the specialist to the dietician and nurse support.

I was able to carry on with my life and maintain a good A1c level for several years. Then when I moved to America in my forties I was shocked by the lack of care and support unless you could pay the big insurers!

In the UK I never had to pay for any drugs because T1D is seen as a chronic condition.

I know though that almost every state has a JDRF group so I would contact them in the first instance, they may know people you can chat to or groups that you and your son could interact with?

Don’t give up but get support to get your Son’s readings under control if not he will pay for it in later life. I had something that made me conform, a sport I desperately wanted to keep playing.

Is there something your son wants to do but won’t be able if he doesn’t get himself healthy?

You don’t have to be alone dealing with this but I do miss the wonderful way the NHS used to look after me. Here it’s very much down to the individual.