Thursday, June 26, 2008

Working at Cross Purposes

Eight years ago Daughter was diagnosed with Type 1 Diabetes. It is a difficult and challenging disease, and on most days she checks her blood sugar at least 5 times and takes at least 5 shots of insulin. At all times she has to have certain essential supplies with her: a blood glucose meter with lancet and test strips (for testing her blood sugar), an insulin pen with needles and alcohol preps (so she can take insulin to cover a meal or snack), glucose tabs and packages of cheese and crackers (to treat low blood sugars). I carry a glucagon kit (for blood sugars so low she seizes or loses consciousness). She records her blood sugars, insulin she takes, and the carbs and calories in everything she eats (at least in theory—sometimes she forgets).

I have worked very hard at making diabetes a normal part of her routine. She doesn’t complain and say, “Woe is me,” when she puts on her glasses in the morning, and I want her to have a similar attitude towards the tasks involved with her diabetes care. When she is with me, she checks her blood sugar wherever we happen to be, and if she is eating and needs insulin, she takes it right at the table (with the pen she can be so discreet about it that some people don’t even notice.) If she is low, I tell her to take some glucose tabs and get on with whatever she was doing. She does have to recheck and complete her treatment with crackers back when she’s in range, or glucose tabs. Unless she has a severe or extended low, she can continue with her activities. Her last two years of high school, she carried her supplies with her and took care of her diabetes without supervision most of the time (there were a couple of times when she wasn’t being responsible and she had to be supervised until she was ready to be responsible again.)

Daughter attends the sheltered workshop, and is supposed to be developing the skills she needs for community employment. Unfortunately, we often seem to be working at cross purposes. They make her check her blood sugar in the clinic, which immediately sets her apart from her friends. In addition to checking before lunch, they make her check before exercise and before getting on the bus. If her blood sugar is below 120 at exercise or bus time, they make her eat crackers. At home we don’t worry about blood sugars unless they are below 70. At the workshop, they tend to panic if there is a low (and often these “lows” are actually within normal range). Daughter picks up on their anxiety and uses it to manipulate them.

Today she came home from the workshop complaining of having a bad day. When I asked what had made it so bad, she told me her blood sugars had been terrible. I asked what they’d been. They had ranged from 71 to 111. Those numbers are all within her target range and were remarkably stable. Of course, they had made her eat three times, and so she was trying to convince me that she didn’t feel good because she’d had such trouble with her blood sugars. I didn’t bite, and after I told her several times what good blood sugars those were, she dropped the pitiful act.

I keep wondering, though, how she’s ever going to hold a job in the community if she’s being taught that normal blood sugars are disabling. I’ve talked to the people at the workshop and told them to relax and explained that Daughter was using their anxiety to manipulate them. Her diabetes educator has done an in-service at the workshop, seeking to explain and reassure. I guess I should celebrate that they let her go to exercise class with a normal blood sugar today. They even let her ride the bus home! There was a time when they made me come get her any time her blood sugar was below 100 because that was such a dangerous blood sugar. I guess I'll celebrate the progress we've made, and hope that at some point we'll all be working to make diabetes a normal part of her routine that doesn't interfere with her ability to exercise, ride the bus, or maybe even get a job!

No comments: