11 year old embarrassed of new diagnosis

My 11 year old son was diagnosed 12/22/14 during the winter school break. He does not want anyone to know, he is not interested in wearing a medical bracelet. He is also hating having to eat snacks during class when the other kids cant eat. His BG levels are still up and down. Highs to lows in the 60s. He doesn’t seem to recognize any symptoms and avoid speaking if he can. He also stutters and its gotten worse since December. Im concerned with his emotional state. Any advice please. He just began Middle School this year which is another issue. Help on how to help my child please.

Oh wow, what a lousy time to be diagnosed. It’s very difficult at any age, but especially difficult at this age where kids just want to fit in. The good news is he will eventually adjust - don’t worry so much about the crazy BG’s right now…they will stabilize in time and it is a constant challenge to keep them relatively normalized. Have you looked into diabetes camps for him to attend this summer? There’s something really cool about meeting other kids who have the same challenges yet still have lots of fun. Are there charter schools or other school alternatives where you live? Sometimes a smaller class size can make it easier to “come out” about it without all the social stigma of a larger school. The stuttering is pure anxiety, but a speech therapist could help him learn ways to minimize that and eventually control it. That Colin Firth movie about King George is a great one on that subject and a very enjoyable film - “The King’s Speech”.

Hi @blainek,

I am sorry to hear about your son’s recent diagnosis. There are a lot of people here that were diagnosed in their early teens so I hope you get a lot of feedback. I was diagnosed when I was about 12. I must tell you that I can sympathize with your son. When I was diagnosed I was extremely embarrassed by diabetes, especially the shots and testing. When you are an 11 year old, your entire world is about fitting in and being like the other kids. It was a disaster for me and it caused a depression that lasted years.

I urge you to find some support for your son. He needs to know a couple things:

that it’s okay to be angry and let down by getting sick. He might benefit from therapy. I was angry at everyone because I got sick – my parents who could fix anything couldn’t fix this, doctors couldn’t fix this and no one could help me out of what I thought was a death sentence.

that there are others like him – please look into diabetes camp, please look at the local JDRF chapter in your area. there is nothing better than fellowship even if he resists at first. This web site can be helpful as well but nothing will beat actual face time.

Lead by example – if you are upset and worried it will directly affect him. No matter what you are actually feeling he needs an emotional rock.
Get as much help from a CDE as you can. There really isn’t any reason to force “snacks” between meals, but this first year is difficult and he’ll need carbs in his pocket for when he feels low.

Hope you are okay – this can seem overwhelming but you will get used to the routine after a while.

Good luck

@blainek

I was 10 when i got T1; that was 43 years ago. I did NOT want anybody to know about my diabetes and I lost a lot of weight. My friends knew something was wrong as I was skinny and late in starting school. A couple words of advice:

Take a deep breath.
Don’t worry that he does NOT want to wear a medical bracelet, find something cool that he might want to wear and incorporate the diabetes information into that.
Have him see a psychologist. You go too.
Find a support group for yourself and him (call your local JDRF chapter)
Find a camp for him to go to – even if it’s just day camp.
My mother weighed all my food … then I would eat whatever I wanted when she was not around! Don’t weigh your son’s food, but learn how much he needs and show him.
The biggest challenge is you remaining calm so he knows everything will be alright.

Best,

Scott

At that age my friends thought diabetes was cool (though I had been diagnosed as a baby so by age 10-11 I had no problems talking about it). They used to like to watch me test my blood and guess what the number would be, or I would let them press the button for me on my lancing device. A few times I let a couple of my friends test their blood because they were curious. I can’t really relate to not wanting to talk about diabetes, as I have always been open about it. My point here is that if you can convince him to talk to his friends their reactions may surprise him (in a good way). Speaking about it confidently will help show the others that it’s not a big deal and that he’s still the same kid.

And yes, do him a favor and look into diabetes camp for this summer–I went to my local camp for 13 years and it was awesome :slight_smile:

Good Luck!

Thanks for the advice. My son does not want to go to a camp. I will give it a few more months to see how he is doing. I will also look into speech therapy. If he speak more confidently than maybe he wont mind talking about it. Im so thankful to have this forum of support. Thank you

I am so sorry to hear your son is stuggling. My 11 year old son was just diagnosed this past Monday and has been our of school at week and he does not even want to go back to school this comming monday. He too doesn’t want anyone to know right now. He is still in shock, as we all are. Sending lots of positive thoughts your way. I hope your son gets more comfortable with things soon. Joe Thank you for posting, your suggestions are great!

My son was quite young at diagnosis so he adapted to a lot of difficult things earlier in his life. That said, by Middle school years he was understandably dismayed and angry about living with T1D. Also depressed.

One of the most helpful steps we took was to get him on a pump which then took away a lot of the burden of a rigid eating schedule. The associated education to be accepted by the medial folks for him to qualify for a pump was extensive, but I was able to work with him on this and mainly took on a matter of fact approach. I learned along with him – and took it as my assignment too. Mostly I have wanted him to know that he would not be alone in trying to cope with any/all aspects of T1D.

Indeed, he fought me during his teens and it was not easy. Boys want to be accepted at this age and they are by nature quite reckless.

He did do Camp but only b/c this was initiated earlier in his life. I do not know if I could have convinced him to go to camp at ages 11+ had this earlier routine not been established. It was helpful for him and he seemed to love it.

We did not have any luck with counseling although tried multiple times, including this current year. My son is smart and he saw through the veneer of those who were trying to “coach” or “coax” him into accepting this most difficult of diseases. Very few therapists know what it’s really like and it shows. I realize this may sound discouraging, yet it has been our experience.

My son eschewed support groups (we’ve tried them all), although I think it’s because we already knew the terrain so well that the blog-world was less than helpful. If he was newly diagnosed today, I think this is the best avenue - peer support via blogs.

I learned every detail about T1D in a steep and rapid learning curve. In this way I could help – even if my help was not always welcomed. We have learned that the medical professionals are about 3% of this T1D life, and my son and I are the other 97%. In many ways this was valuable insight as it forced us to be knowledgeable and independent.

In my experience as a mom, full support of my son’s emotional/social/medical needs has been key, even when it has meant standing back and providing this support from a distance.

Also, a sense of humor (albeit cynical) has helped my son and I sustain a relationship. I would say: “well this really does suck, but we’re gonna get through it and you are gonna have your life.”

I cannot be sure if my comments will be of any help but I am a “veteran” mom and I am still giving my son my total support with all its heartbreaks and trepidation.

Very truly yours,

Good evening all. This is the 11yr old’s mother again. So my son is doing a little better, however he continues to have lows around 68-70 at school before lunch. The nurse has to call me every time its under 80. I make sure he has a morning snack around 9:00 AM but still it drops. He doesnt like nuts or peanut butter. Any advise on snacks I can send to school to maintain his blood sugar longer?

One more thing, he has started sneaking unuhealthy food in the evenings without insulin, causing highs at bed time. Any advise on that.

Thanks for any and all assistance. Its been 2 months since his diagnosis and Im so burned out.

Help please

@blainek

Ok - all is normal. Peanutbutter is high in fat and not good for lows unless you are using the crappy store bought brands. I was 10 when I got T1 - 43 years ago - did i “cheat” of course!!! The best advise is to tell him to cheat, but TREAT!! If he wants a bowl of candy - fine! How many carbs? 100 — what is his ratio? He just needs to take a shot and all will be fine! Really! It’s normal to want to be normal for am 11 yo — teach him how to take care of himself – when I was diagnosed we did not count carbs – it was exchange diet… what a bummer. He can live a normal life, but has to test often and take insulin.

He will get it!!

Best!!

I know what you are going through. My daughter is 15 and was diagnosed Dec 30, 2014. We found out during a well-check. She was sent straight to the hospital for DKA and dehydration. She is also in middle school and is embarrassed that she’s “different” than other kids. Her school let’s her keep her monitor and her Glucogon kit on her at all times. Her school doesn’t have a nurse so it is up to her to make sure she does what she needs to. In the beginning she had massive lows. One day she started shaking so badly that the other kids noticed and got the teacher. She was embarrassed but I explained that she would be more embarrassed if she had passed out and kids record it and post it on Facebook. She carries her glucose tablets and a juice box in her bag. I am supposed to meet with the school Friday to set up accommodations for her. If he eats at school you can get the carb information from your food nutrition director so you can plan the insulin for the carbs eaten. She created a book of food labels and we created one to keep track of her carb intake. She started off at 8 units of Humalog. Now we do a ratio of 1 unit per 15 carbs. Her sugar is a little more stable at this time.

Hi again,

I agree with ScottT regarding “cheating,” that is, EAT and TREAT.

From a relationship point of view, I did start early early on with my son with a plan which did not include punitive or negative words. For example, I did not call his eating ad-hoc “cheating.” This is too negative and promotes secrecy and guilt in the child. It starts a cycle of non-communication.

An approach that worked for me (and still does), is to believe in my heart that my son’s instincts were normal and acceptable given the hard situation he has to live with … for life.

A typical dialogue when my son ate things or had juice/soda/etc., was to be matter-of-fact about the number of carbs he consumed, and then the insulin dose to offset the carbs. This served two purposes: it was non-judgmental, and he/we soon learned carb content of foods. Kids learn this super fast. Their brains are amazing and he will learn to evaluate foods on the fly.

I am not a pro … I still make too many communication mistakes, however letting an 11 y.o. boy feel he has some control might make a difference.

SNACKS: more of a challenge than the average person may believe (those who do not have T1D). My son grew SO tired of mandatory snacks and could hardly look at the often recommended PBC’s (peanut-butter-crackers).
He did like cheese and still does. So, cheese and crackers. Fruit WITH cheese. We learned early on to understand that food falls into 3 categories: protein, fat, carbohydrates. Carbs can be whole wheat or candy or juice, etc., but these are all carbs nonetheless. In these early days it may help to simply know how many carbs (grams of carb) and work with this information – rather than deeming some carbs “bad” and some “good.” As long as the EAT & TREAT from ScottT is your son’s plan then he may not feel so pressured or deprived.

As mentioned, the only way he/we got out of this difficult routine with snacks was when my son started using a pump. It’s expensive.

Sincerely,

Hi @blainek,

Me again! One last thought that as parents we all know - and I am NOT a parent of a T1. Everyone is different. Your son is clearly disturbed, anxious, and stressed and a whole new life. Give it some time. Make sure he is testing his BG 8-10 times a day.

I have 3 sons (under 21) – If my first or second son were diagnosed with T1, I know I would be the target, but they would deal with it. My youngest, who by nature is anxious and angry about everything (I don’t know why - he always has been) - I think he would NOT follow and “rules” and we would have a difficult time with him.

I just hope that we focus less on a cure and more on care. They’ve been telling me a cure was around the corner for 40 years! Please, just make my life easier to live … I even would get the lecture from my pediatric endo that “if a cure were found and you are not in great shape and taking care of yourself, you probably won’t qualify.” I think he is dead now!

Thanks for the advise Everyone. @ScottT I have implemented the Cheat or eat but Treat. He actually smiles when I say it. So that’s a good sign. @Boston I will try cheese and crackers along with some fruit for school snack. You are so correct my doctors are 3% and my son in I are the 97%. I believe the PE first thing in the morning is a factor in these lows. I am working with the Endo doctor to see if we need to reduce his Lantus a little more to keep from getting so low in the mornings, and before lunch.

Also an UPDATE on my son’s stuttering. Its still pretty frequent and conversations are so difficult for him. The school has a speech therapist who is evaluating him this week. Hopefully she can assist with the stress and anxiety and suggest techniques to help.

Thanks again.

Hi,

Your son and you will learn as you go which – I think – is what most have to do seeing that we are 97% !!

T1D is complex. So is stuttering. If possible, I suggest you tell the speech therapist that you REALLY NEED her/him to help as much as possible so that you can focus on the new routine with T1D.

There is a man who became famous with his study of wild animals, but MORE famous when he at last told his own story about stuttering. Alan Rabinowitz. Again, though, the speech therapy professionals should read about this man since you have a lot on your plate with T1D parenting.

Exercise/PE: all of us burn through our reserves (i.e. glucose in the body) at different rates and each exercise has its own profile. As ScottT has mentioned, testing blood glucose frequently is about the only way to learn. We did not find MDs helpful with adjustments because insulin uptake changes mysteriously and MDs DO NOT ALWAYS KNOW.

In today’s world, your son should be allowed to carry a small kit in his pocket at all times and test whenever he feels the need. My son has been wearing cargo pants for ages due to the room it gives him for his stuff. Your son can keep the used lancets and used test strips in his kit until he gets home. My son uses the same lancet for many weeks as it is only touching his skin. I hope his school doesn’t prevent him from doing whatever he needs WHEREVER he needs (or wants). We have found the Nano to be very good, accurate, and small.

Sincerely,

I can only relate by saying, I’m 32 years old and still slightly embarrassed about it. However, I’m much more open about it. A certain TV commercial with that old fat guy in it was what really induced that embarrassment. Other kids in school would say, I had deeaabetes…yeah, that sucked. The older i have gotten and living with it for so long has helped me be much more open about it. Now, it doesn’t really bother me anymore. I won’t tell anyone unless-ed asked of course. I wouldn’t wear that medical bracelet either when I was young. By the way, your son reminds me so much of myself the way you have explained him coping. I would hide my snacks, make an excuse to leave class if I needed too, I have come very close to passing out due to delaying the fact I needed sugar, but was too embarrassed to eat in front of the others.

I think building your son up may help him a little. Putting confidence in him & T1D. Anyways, good luck. That’s a tough stage to go through at his age. Been there and done that. As a young kid, i never shared my feelings with others about T1D, I really just learned to talk myself out of it (hard to explain). It is a never ending tough road. Hang in there! It will get better, my advice is to be a listening ear for your son. Because when he is ready, he will come to you. You can mark my word on that. Have a nice day.

I was diagnosed during Winter Break of 2004. I totally understand being nervous about not wanting people to know. He doesn’t want to be treated differently! I have always been open about my diabetes, but I have a friend who does not let anyone know, and it can be a very scary thing.

Middle school is when the hormones start, so blood sugars are going to be kinda crazy for a bit. I feel for you. I remember being diagnosed and my mom being so worried. The best thing to do is find a diabetes support group in your area. He will be able to meet other kids around his age with the same disease and he will realize that he is not alone.

Also, keep communication open between you two. Even though he is not going to want to talk about it, you NEED to. Find ways to make it easier, if he would rather text you than physically tell you his blood sugar, let him. Encourage him to learn to do things in his own because in 7 years he will be off to college or moving out and mommy and daddy will not be there. For years my mom checked m9y blood sugar at night and for about 4 years now I have been doing it because I am 19 years old. I need to be able to do this all on my own.

If you have any questions, or anything feel free to contact me!

Best of luck!
-Hannah

My daughter was diagnosed in Dec 2014, she is 11. The thing she was most worried about when we were whisked off to the hospital was, will my friends still like me or will they??? Tease me, be afraid of me, avoid me, think I’m contagious??

While we were in the hospital I notified her teacher, what did we find? Her best friend growing up had T1! She asked Amelia, my daughter, if it would be ok to let the kids in class know, let them ask questions without feeling awkward with her in the room. Amelia agreed and guess what happened? The kids rallied around her, they made cards for her. Some kids missed recess to make the card extra special. The nurse came into their classroom and they got to ask questions. Her teacher came up to the hospital and brought the 30+ cards (some from kids who aren’t in her class but heard about it). We cried with joy when we saw and read these cards. The support was overwhelming, those kids love her. Some said this makes her even more special than she already was.

She’s got her routine at school and at first some kids were curious about the process but now it’s just a normal part of her and the daily routine. For snacks Amelia likes hard boiled eggs, meat sticks, cheese, air popped popcorn, fruit snacks, applesauce and crackers.

So many people know someone who is T1. It’s amazing, I never knew because it wasn’t on my radar to think about. I encourage you and your son to be open about the situation. My guess is people will be supportive and you will find other people to connect with. Amelia found out someone else in her grade has T1 and they talk and support one another. He’s a great basketball player. My husband was floored when he found out it was the boy with T1. It gave us hope and reassured us Amelia can still do sports and be anything she wants to be.

Trust that people will support you. I will and I’ll think good thoughts for you.

Lisajo