Susanne went to Children's Hospital to talk to a family therapist about Charlie. He's been crying a lot in school.
We do everything we can to make him feel like a normal boy, but let's be honest – living with diabetes is not normal. There are times when he must eat Jell-O in school rather than the cookies or pretzels he thought he was going to have.
So he cries. He rubs his eyes with his fists, runs into the hallway or bathroom and cries. Charlie's teacher has expressed that he's becoming more and more upset when high blood sugars prevent him from eating what he wants to eat. I'm sure the high blood sugar in itself contributes to his inability to control his emotions.
Susanne thought the meeting with the therapist went well.
Here are some "Don'ts" Susanne came away with:
The Main Event
Don't make diabetes the main focus of everything. Susanne mentioned to her that I blog about diabetes and how we're very involved with the Walk to Cure Diabetes and how I'm on the board of JDRF. "That's all fine," she said. "Just don't make diabetes such a large focus of attention in your daily life at home." I'm paraphrasing. Easier said than done, me thinks.
Reacting to High Blood Sugars
Susanne mentioned that I sort of lose it sometimes when I see an insanely high number. She may have been referring to just the other day when I saw 498 on the meter's screen and screamed like I shattered my ankle in 29 places.
"Don't do that," the therapist said.
Going forward, I will excuse myself from the situation reservedly, run a mile into the wilderness and howl my head off. Or I will keep it inside and learn how to hide my feelings.
The Truth? You Can't Handle the Truth!
Don't use the meter that talks to the pump. The idea here is that at this time – while diabetes is causing Charlie some serious stress, he doesn't need to see every single high blood sugar that flashes on his pump screen. Using the other meter, we can say "you're a little on the high side" rather than letting him see yet another awful number.
Not so sure about this one. Charlie will demand to know the number.
Back Off – The Sequel
The therapist told Susanne that it is common for parents of children diagnosed as toddlers to be extra protective, but we need to loosen the reigns a bit. This echoes the endocrinologist's recommendation to "back off." Since Charlie started elementary school, we have had health aides keeping an eye on him, following him with diabetes bag in hand. The therapist said that by doing this, we are eliminating issues before they occur. In clearing this path for Charlie, he doesn't learn how to resolve problems on his own. Next year (second grade), that will all change.
First things first. If I'm going to make diabetes less of a focus in our house, I should start with Charlie's room. Anybody want any posters of famous diabetic athletes? I'm tearing them all down. See ya, PGA golfer Scott Verplank. Adios, NHL hockey player Nick Boynton. Nice knowin' ya, U.S. Olympic gold medalist Gary Hall Jr. So long, NBA basketball player Adam Morrisson. Farewell, Halle Berry.
What!!! She was an athlete in high school! Actually, Upon further review, Charlie and I have decided it's probably best if we keep [ahem] the Halle poster up a little longer.
Oh, Charlie also has one of those 2009 'Days with Diabetes' desk calendars I should probably toss out. Let's see, what's today, June 16?
June 16, 2009
Day 2,035 with diabetes
That can't be healthy.
Wow, those are some tall orders. How can you back off and not make "D" the main focus when you're doing a site change? Or any of the million other activities required by "D". I realize this is your point, I'm just joining you in your flabbergastation at the therapist's recommendations.
Sounds like good advice to me. I feel for you parents. As a person w/ adult onset T1 (at 27), I know how important it is for my mental health and relationships to not let "d" consume more of my emotional energy than it has to. Anything you can do to help your son disconnect emotion from the numbers and just see them as a means to making decisions sounds like a good plan. It's really hard not to judge ourselves based on them as it is. But not revealing the #'s sounds like a bit much...almost making a bigger deal out of them by ommission.
I complain about numbers ALOT, but I always make sure Maddison knows that DIABETES is crazy and just doing what it does. I think that helps to reinforce that highs/lows aren't our "fault".....if she 380 I might say "THAT DANG PIZZA" and follow up by saying thats why we dont eat pizza every day. I think it lets her know that each number is a learning experience, not a time to feel like a failure. Also, I'm sorry, but I believe venting about Diabetes is very important. Yes, I do want to scream at a high number, and thats ok. (but I'm also not a therapist, so maybe I'm wrong)
Maddison also knows that I spend alot of time working numbers over night sometimes. I always inform her that "You must be growing, I can see it in your overnight numbers"......I can imagine what the therapist would say to that! YIKES! You know your child best in the end. Therapy is good to help us see things from another perspective of course, but for me I include Diabetes alot because I want Maddison to know that Diabetes is crazy and unpredictable sometimes....we just have to always TRY to do better and know that in the end, Diabetes still has the ultimate say.
The food issues....I always remind Maddison that years ago kids just didnt get to eat sweet treats like we do today. There is nothing fun about being left out of sweet treats and such at school....but ultimately HEALTH is more important. There is a time and place for everything. Sometimes we just can't "be normal"....easier said than done, I know. I still fight the battles with sweet treats at school when Maddison is high......I dont know the best answer there, but then again, does anyone?
The transistion to 2nd grade is looming - there are changes coming outside of diabetes - he might be reacting to everything shifting gears and that could cause a big reaction - these little guys with diabetes (my son is same age and grade as Charlie) don't have a lot of control of anything in their lives...and that is scary even without diabetes. When we went through something similar so we made diabetes the smallest thing in our day - and kept repeating to our son - it is 3 minutes at a time - we can do anything for 3 minutes - then you can go on with your day. He gets the testing/bolusing etc. over with and goes on with his day. Maybe make it short and sweet and as quiet as possible until he gets through this rough transition. You will get through - he will be a healthy happy summer lovin' kid before too long!!!
I would get upset about high numbers too... but since have learned..once the number is flashing on the screen.. it's too late.. damage done.. no need to get upset now.. You and your wife are doing the very best job.. It is hard as a parent of Type 1 not to let Diabetes control everything..good luck.. and rest your head at night knowing you are great parents with a huge challenge.. and let Charlie know you love him no matter what!! that is what kids really need.. and insulin or course :)~~~~~~~~
I was diagnosed with T1 in 1979 when I was 7 (in 2nd grade) - I can relate to Charlie. When I was growing up diabetes was not as well known as it is now. I still remember my Elementary School principal walking away from me - and friends asking if I was going to "have a fit". That was then, this is now - teachers, parents, and even children are a lot more aware of what diabetes is and the symptoms of high and low blood sugar.
I agree that diabetes should not be the main focus of life for you or for Charlie. It is sad to say but portion control is the key - if he wants to have a cookie, but his BS is a little high - maybe give half and cover with an extra unit of insulin. I will confess, the more my mother tried to restrict what I ate - the more I wanted what was being restricted.
Some may say that is a bad example - but as I raise my own 2 year old - I have learned there are battles to fight, battles to loose, and there are times when compromise is best.
This September I will have siabetes for 30 years - it becomes a part of you - not who you are - but just you. Best wishes - and good luck.
My 9 yr old daughter is 1( dx'd an yr back)..one thing I tell her makes her feel not so different from other kids:
Everybody needs food to stay healthy and to live ultimately...she needs a little more than that: "insulin" and checking her numbers often.
Think about it..it makes our life as parents a little easier..changing the perspective helps.
This is good advice! I work with the Medicine Shoppe and we see many parents come into the specialized care center to talk with our diabetes specialists on how to cope themselves and help their children, especially in school. Everyone has a different coping mechanism but it is conversations like these, with advise and examples that help.