Struggle

It has been a month and a half and no peace.  It is 4:17 am, I got up to check my sons bs at 3am and he had a fit for 46 minutes before giving in.  He refuses to eat very much b/c he knows how much he eats affects the amount of insulin he receives.  Of course I explain that he gets a shot regardless, but he knows if he eats less than 25 carbs he does not get a shot.  And no I did not tell him this, he figured it out (8years old).  I tried the approach of you get a shot of the same amount of insulin and it does not matter how much you eat.  Well he figured that out too.  His behavior at school is beginning to shift a little negative with behavior toward other children.  And he directs anger toward me too.  I understand as much as a mother can in this situation of what he may be going through internally.  But he does not hear me explain why. He turns a deaf ear.  I find that the line of discipline and understanding for this time in his life to be so blurry to me.  Should I place him in time out when he back-talks me or take things from him. Like when he says no I am not going to take my shot, or no I am not checking my bs, or no I am not hungry which is avoidance.  Or if I do am I not being understanding and he needs to vent his anger.  As adults when we are upset sometimes we take it out on other people and we know it is not right after it is said and done.  We lose control and we have known better for many many years.  How do I expect an 8 year old child to control himself so soon when his world sucks right now. I have explained countless times of why his shots and checking his bs is so important and how much I love him and we are a team. I have offered to check my bs with him and take a shot of saline solution every time with him.  However, he says he does not want me to b/c he does not want me to hurt.  I tell him mommy can do it and chuckle and say mommy is tough too. Has anyone else had to struggle with their child like I am? Does anyone have any suggestions on how to get control of him.  We go to our 3rd visit next week and he will finally meet other children in the same boat that have been recently been diagnosed.  I am sure this experience will help, but I don't think it will make everything all better for him. And that is what mommy is suppose to do and I can not figure it out.  It is frustrating.

I am so sorry you are having to go thru this! I can’t say I have really experienced this much with my child since she was three when diagnosed. She is now six. We have experienced this to some degree. I just tell her what would. Happen to her body if we don’t take care of her diabetes and I give her the gruesome truth. Also she is a pumper and that helps a lot. She was on shots up until last year. Even though I haven’t had these problems too much with my daughter, I sympathize with you and I understand! Give him time. He will come around!

The first few months and weeks are so hard. You recognize that this a huge adjustment for your son. He has so many feelings and it is hard for him to express them all. I would suggest not punishing him unless he is being physically violent. (I tell my son it is OK to be angry, but we can't hurt ourselves or other people when we are.) I would encourage talking with him whenever he is angry, and asking him how he is feeling. You may need to suggest feelings: sad, angry, disapointed, out-of-control, confused, etc. I would probably cut back on the explanations of why you need to test or give a shot, he seems to know it, so that is probably just ticking him off more. I often said "This is what we need to do to keep your body healthy. As soon as we are done, you can get back to playing." I would just stay really calm about it and said it with a low, firm, no-nonsense voice.

We also notice that my son seems to over react to non-D related things. I really believe this is because he gets frustrated by his lack of control on D-care and forced compliance in that area that he wants to have more control over other areas of his life. I try to find ways to let him have more control when possible. Unless he's low, does he really have to eat those carbs right now? Can you give him more control over what he picks to eat or when he eats it? It is more work on  your part, but it might help him feel better.

For my son, when he is angry, I tell him to go to his room until he is ready to act civil. This can lead to a lot of toy dumping and throwing in his room. I'm OK with that. After a few minutes, I go in there and then hold him in my lap, which he fights at first, but relents within a minute. I just tell him that I can't help him with his problem or his feelings unless he tells me what he's feeling and why. I continually remind him that it is OK to feel however he feels but it won't feel any better until he talks about it. He may not be able to explain all his feelings but I think it is important for his future emotional well being to be able to talk about it. It isn't easy.

I would talk with your endo and/or nutritionist about it. I'd make sure there is time for you to talk with them during the visit when he his not in the room.  Is it OK for him to eat some bare minimum of carbs and get filled up on other foods? Our clinic warns us of getting into food fights (thinking that it will lead to bigger issues later). If the kid doesn't want to eat, don't force them (unless low).

Finally, for the middle of the night checks, do you have to wake him up? Our son just sleeps thru it most times. Use a small flashlight or a book light (they sit nicely on the bed and direct the light down) and as long as I have everything ready, it just takes the finger poke and then he can pull his hand back and go back to sleep.

Sorry this was so long. I so feel for you and your son. It is just so emotional right now and that was the hardest part for me to figure out and it continues to be the hardest part to deal with. I just wish I could give you a big hug because it's hard. But if you keep working on it, it will get easier.

I absolutely love your suggestions with regards to his eating and tantrums on how to help him through this difficult time.  In fact,  I am going to print out your letter as reference to help me out during this struggle.  I have read your response already 3 times trying soak it all in.  As you can imagine my retention of information is just about tapped out from everything that I am learning.  So in short Thanks soooo much.

As for night time checks.  I use a small flashlight and sometimes my cell phone light.  He still wakes up and refuses.  My son is back to having me give him his nighttime shot of Lantus after he goes to sleep.  Last night he moved and woke up when I placed the needle in and I had to quickly remove it and sit there until he fell back to sleep so I could go to bed.  And at 3am he woke up as usual and would not give me his finger.  I try so hard not to wake him by snuggling or trying to give it when he is exhaling or inhaling or I place my hand on him softly so that he feels love.  And I can not seem to win.  For the first time last night I gave up with trying to get his finger and said fine we will not check it.  I went to my room and prayed for him to be well and tried to go back to sleep.  Perhaps I should change the time to an hour earlier or an hour later maybe his body clock is set to fight knowing I am coming to poke him.  Hmmm.  I think I may try that tonight.  Wish me luck

 

Hi, my daughter Casie is 11 and we have the same kind of struggles with her.  She was diag October 2008 so we have been dealing with this for a year and a half.  I did notice it got better when she went on the pump.  She has been on the pump now since April 1st.  When she went on the pump the sneaking food (because she did not want the shot) stopped.  She still takes out all of her frustrations on me.  Sometimes I let her get away with it if I feel it is diabetes related.  I am still trying to find that line where you blame the blood sugar or is just because she is a preteen.  One of the things that seem to really work with her is I will make sure I give her enough time to do the testing.  I will tell her she has 5 minutes to get her stuff together and test, and this seems to help.  I think she just needs to feel in control of something.  There are still times when she says no and will fight me.  On the second time I tell her I also say to her that if I need to tell her a third time "I will be the one doing the test on her"!  So far I have not had to do this.   I don't even begin to understand what Casie is going through!  I have sat her down and told her, she is probably going to hate me at times, but I need to make sure these things are done so she is ok.  I used to think she was not listening to me, but sometimes she will make a comment about she knows I need to do what I need to do whether she likes it or not.  So far I just take it one day at a time, and on some days I try to take it one minute at a time. 

Kathy

Tylee,

I hope your son will feel better after meeting other people who have type 1.  I think it is hard for everyone involved parents friends family and of course for the person who has T1.  I explained it to my children that this is something they will have for the rest of thier life.  I can help them and if I could I would take it from them but I can't so we have to work together. I went towards the bribes at first after so many times of testing and shots they would get a little something extra (movie time, coloring books, extra game time) I also let them pick out what type of snacks they wanted.  I let them choose the finger to poke and where they were going to get the shot.  I also let my daughter pretend to give rufus the bear a shot at the same time.  My doctor told me to always attempt to wake them up for early morning checks.  This way they know they are in control of thier body and no one can just come in and poke them.  He said as adults if you thought every time you went to sleep someone was going to sneak in and take something from you we would get upset too.  So I did now it has been three years I still try to wake them up most times they just throw their hand my way and don't even open their eyes.  I know every child is different so the best thing might be just to sit and talk with him. Let him know you to feel bad he has to go through this but if you all work together as a family it makes it a little easier.  Ask him what would make him feel better and have a set schedule when you eat and when you test his BG.  The BG testing is hard to have a set schedule for the first little while.  We all choose to eat together have snacks together this way my oldest didn't feel singled out which worked our great since my daughter was diag just three months later. Also, I never discipline unless I check the BG first.  Most of the time they were out of target.  When that happened I would try to explain to them this is why you feel so bad is because you need insulin or need to eat.  This worked out great because my 6 yr old can now tell by how she feels if she needs to check her BG.  Hope this helps let him know he is not alone and there are many people who wish him nothing but the best.

 

Penny

 

JDVs mom has great suggestions so I will just tell you a couple things that helped us...  

Accu-check Multiclix lancets....my son calls it "the poker that doesn't hurt"  After we started using that, we no longer had struggles to get bgs, he just hands us a finger.  They will send you a free kit if you call or go to their website.

For night checks, we got a head flashight...sure makes fumbling around in the dark much easier.  Our son sleeps through his night checks (and even when treating lows!!)

Never NEVER give in and don't give a shot or check bg if he fights....In the beginning, I would hold my son as we both cried and told him that it was for his health and if I didn't do it, I would not be a good mommy.  He did not get a choice in IF we did it, but how and where.  If he cooperated, it was quick, easy and painless and if he fought, it would hurt.  

He also is on a pump (animas ping)  That has allowed him to eat/not eat as a normal child.  He gets a set change every 3 days instead of 3 shots every day.

Get involved with other parents of kids with diabetes...it is nice to talk to others who have been there and/or are going through it.  Check out your local JDRF chapter...mine holds a coffee group every month for parents.  Also there are many camps across the country specifically for kids with diabetes...with summer approaching, that might be a great way for your son to connect with other kids with T1 and to accept his diabetes and all that goes with it.

Anyhow, you will figure out what works best for you and your son.  It does get easier (though never easy!)  You are doing great by being on here and hopefully realize now, you are not alone.  Best of luck :-D